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  1. Today
  2. The mist surrounding my weight loss has cleared at last. I was eventually diagnosed with coeliac disease. I am now on a gluten-free diet, and my weight and appetite have returned to normal. Nevertheless, I was baffled why, at the age of 81, I had suddenly developed coeliac disease. Well, I have also solved that mystery - and the answer may come as a surprise to some of you. I have just found this paper https://www.ncbi.nlm.nih.gov/pubmed/7200931 which shows the strong link between low testosterone levels (the main purpose of ADT) and coeliac disease. As I always suspected, my ADT was, indeed, doing me more harm than good. Zoladex served me well in getting my PSA down below measurable levels, but they have now remained unmeasurable for more than 8 years. I also have a whole raft of other symptoms associated with low testosterone levels, including numb hands and fingers, pale complexion, memory loss, and several other things. I abandoned ADT in January this year, and I will be seeing an endocrinologist shortly to see if we can restore a safe testosterone level. Hopefully, this will ease some of my symptoms, and may even CURE my coeliac disease!
  3. DesG

    THERANOSTICS

    I received a reply fro Louise Emmett - her response - "There are a couple of trials due to start in that space - but not going yet - probably next year. So the Chemotherapy and LHRH planned sounds a good place to start. We do self funded treatment as well at Vinnies - but that is not yet shown to be better than chemo and currently all our trials are for men in whom treatment has failed." So I head off to the Oncologist at Westmead 24th October to get things going - that is, Chemo and ADT regime. Have had the ADT implant done - on pain killers and having second shot of radiation on a still painful spot on Tuesday.
  4. I have had the good fortune to attend a couple of PCRI Conferences in LA, where Dr Moyad is the Moderator. He definitely believes a heart healthy diet is a prostate healthy diet. (Mediterranean diet) If you have a healthy diet a great majority of the time, this enables you to eat what ever you like, for example, you go to dinner with friends or cake with coffee on a special occasion. He definitely not suggesting whatever you like whenever you like.
  5. Good to see diet and nutrition being discussed here. Impressive as this guy is I feel like he is kind of telling us what we want to hear, eat what makes you happy is a very attractive approach but not exactly scientific or evidence based. In fact there is lots of evidence in support of very specific dietary approaches like eating more soy products, more fresh fruit and vegetable, less wheat, dairy, sugar, alcohol and red meat. I don't think anyone should be dogmatic about it but taking even small steps in these directions seems very likely to have real benefits. There is also plenty of evidence around cooked tomato (lycopene), turmeric, green tea, broccoli and broccoli sprouts, that would all be fairly easy to incorporate into your diet so I'm not sure why there isn't more promotion of some fairly simple dietary guidelines. https://nutritionfacts.org/video/the-role-of-soy-foods-in-prostate-cancer-prevention-and-treatment/ https://nutritionfacts.org/video/treating-advanced-prostate-cancer-with-diet-part-1/ https://nutritionfacts.org/video/tomato-sauce-vs-prostate-cancer/
  6. Last week
  7. Pinks

    New Diagnosis - Our story

    Thank you Alan. Appreciate it. Hope you are doing well. I will convey this to my dad. He appreciates all the comments and information that I gather here and inform him.
  8. alanbarlee

    New Diagnosis - Our story

    Hi again Pinks, It'd good that your dad's radiotherapy has been beneficial. His apparent neuropathy (possibly with circulatory issues as well) does raise balance problems and the risk of falls. I can only suggest that he persists with daily aerobic exercise within his limitations, but with a view to progressively building his stamina, and that he adds some level of resistance exercises under the guidance of an exercise physiologist trained in cancer rehab, or at the least a personal trainer. At the same time he can be guided to do some daily balance exercises. All of this can be done in a gym or at home, and he can maintain a written record of his program adherence and his progress. The benefits will be to his mood, as well as to his body. If he needs some pain relief, there is ibuprofen, paracetamol or both, all with daily maximum doses and plenty of water. If the pain is chronic, it's usually best to anticipate it rather than trying to overcome it. Anything else should be via his doctor - who should also provide individual guidance to his exercise provider. Best wishes, Alan
  9. Pinks

    New Diagnosis - Our story

    I have not posted in a while. My dad went through the radiation. His PSA after 2 months is at 22 (it was 49 before). He was not under any medication during this time. The doctor wants to check again in 2/3 months to see if it goes down further. He got huge relief from the back pain. He is slowly gaining strength to walk independently. But that's a little slow progress there. He is worried that he may lose his balance. His feet at still a little bit swollen (which comes and goes). We are not 100% certain why the swelling is still there and why isn't he gaining his strength quickly to walk. What can we do to improve that? Although, the sever back pain is gone, but he does have here and there back pain. What I was told is that one of disc has been impacted and that might be the reason. He needs to be careful not to cause any stress there. Is there any specific exercise he can do or take any medication to improve his overall health? Thanks so much in advance for your inputs.
  10. Thanks for this video. I found it interesting and informative.He is a very good speaker. Bruce
  11. There are five Thursdays in this month. Each Thursday I aim to present one of the YouTube videos from the PCRI. This video today is about diet for men with prostate cancer, by Mark Moyad, an old friend of ours. And a reminder that we have a few videos of our own on the JimJimJimJim channel: https://www.youtube.com/jimjimjimjim/videos Including an audio YouTube video of Mark Moyad on one of our phone-in meetings: Mark Moyad Prostate Cancer Research Report 2017: “Dr. Moyad is arguably the world’s leading medical expert on dietary supplements, but he’s not quick to recommend them to everyone.” (from the Editors of Prevention Magazine). He currently occupies an endowed position, which was created and funded entirely by the patients he has helped over the past 25+ years. He is the Jenkins/Pokempner Director of Preventive/Complementary and Alternative Medicine at the University of Michigan Medical Center in the Department of Urology. The Prostate Cancer Research Institute (PCRI) is an important source of information for about prostate cancer for patients, families, and the medical community. As part of their mission to empower men and their caregivers they make YouTube videos.
  12. Prostate News is a publication from Prostate Cancer Foundation of Australia. link below https://www.prostate.org.au/publications/prostate-news/
  13. DesG

    THERANOSTICS

    Thank you so much Barree. Will give them a few days to respond to my email - then follow up with a call. Fingers crossed the planets will align for me - could do with a break. I inherited every crappy gene from both my parents, need some luck.
  14. Barree

    THERANOSTICS

    Hi Des, Your idea of a getting a referral to Prof Louise Emmett makes a lot of sense. On one occasion recently one of our members managed to get on a Lutetium177 trial being run by Prof Emmet which had not been widely publicized. Your email to her is a good starting point. Commercially The first Lutetium infusion including scans could be somewhere in the region of $12000.00 and subsequent infusions and scans about $11000.00. As Patrick Turner has mentioned in one of his recent postings the addition of Enzalutamide to Lutetium177 as suggested by Prof Emmet proved most beneficial for him. The addition of Enzalutamide will of course add to the costs mentioned above but I should hasten to add the addition of Enzalutamide has not as yet been proven to be beneficial for all patients. Most times 4 infusions of lutetium are required but Bruce who has just posted his treatment history (see above) has indicated he has benefited from just one infusion.We all respond differently. Prof Emmet is not far off conducting a trial using Enzalutamide with Lutetium 177. As I don’t know your prior treatment history I don’t know if you will be eligible for this trial but if you are - this will be a great opportunity to get this ground breaking treatment on a trial at little or no cost. I hope that you are eligible for it. Cheers, Barree
  15. Earlier
  16. DesG

    THERANOSTICS

    Thanks for the info - Barree -any idea the costs of obtaining commercially - would the best option be getting a referral to Louise Emmett? Although I've probably missed the boat to try this - had my ADT implant on Friday. Have sent off an email to her dept. at St Vincents - will see what they come back with.
  17. John_H_T

    THERANOSTICS

    Hi Barree, Great work on explaining this treatment. I have been reading about it recently but could not find anything explaining it so succinctly. Well done and thanks. Regards John
  18. Barree

    THERANOSTICS

    Hi Des, The TheraP trial looked for patients where their:- prostate cancer had spread to other parts of the body and had grown despite previous hormone treatment and treatment with docetaxel. Their next step would normally have been to consider further chemotherapy with cabazitaxel. However I am sorry to say that this trial is now full. I understand the last patient to be recruited was signed up about a week ago. The only options now are to obtain Lu177 treatment commercially or wait and watch the up coming trials to see if you are eligiable for any of them. Cheers, Barree
  19. Bruce

    THERANOSTICS

    Thanks Barree a succinct explanation, the best I've read yet. I had a radical prostatectomy 9 years ago. In late 2017 I found the cancer had reoccurred in my lymph system and had 6 weeks of radio-therapy at St Vincents Sydney. Following the radio-therapy my PSA dropped to 5 over 3 months and then started to climb. A scan showed a new spot had developed in a different part of my lymph system. It was suggested that I should see Dr Nat Lenzo at Theranostics before committing to chemo. I had one infusion of Lu177 18 months ago. My 3 monthly PsMa scans have been clear since, so I'm feeling very fortunate. I'm now moving to a scan every 6 months. Bruce
  20. Barree

    THERANOSTICS

    Hi Patrick, My thoughts are that as long as the scans continue to show you are responding to additional Lu177 treatments there is every possibility that you will get a corresponding life extension. As far as I am aware some patients in Germany have had up to 9 infusions.
  21. DesG

    THERANOSTICS

    Does Chemo and ADT have to have failed before this treatment, or can you access earlier?
  22. ardee

    Passing of UsToo founder Gerald Chodak

    Howard Wolinsky, who frequently writes about PCa - especially AS on MedPage Today, is crafting his own obituary that will shortly be published on that website. Howard paid a moving tribute to Dr. Chodak during the AnCan AS call last night; he has known him over 40 years and like Jim, Howard was another mentee. Update - here's the link kto Howard's obit: https://www.medpagetoday.com/special-reports/apatientsjourney/82547
  23. JimJimJimJim

    Passing of UsToo founder Gerald Chodak

    I was sad to hear of the passing of Dr Gerald Chodak. I found him extremely helpful as my consultant early on in my prostate cancer journey. I was honored and grateful that such a world leader would give me his time. Later, he was invaluable and inspiring as I developed a mentoring role for other men with advanced prostate cancer. One Skype call I took from him, he was in Rome, Italy at a conference. It was past midnight there, but he patiently and thoroughly dealt with my issues until everything was covered. His videos also have inspired and empowered many men and their carers. A thorough gentleman. Another who will miss him: https://prostatecancerinfolink.net/2019/10/02/gone-but-by-no-means-forgotten/ His YouTube channel: https://www.youtube.com/user/gchodak1 Perhaps his greatest empowerment - starting UsToo - which grew from a collection of men from his surgery into a USA-wide coalition of prostate cancer support groups: https://www.ustoo.org/ Jim
  24. Patrick Turner

    THERANOSTICS

    Thank goodness you have explained the technicalities of theranostics a lot better than I have repeatedly tried to explain to a lot of ppl online. Theranostic treatment is gaining popularity because it works more than it does not work compared to a number of other things one might try when ADT, Cosadex, Zytiga, Xtandi and chemo fail to prevent Pca growing to put man into palliative care and face his end. I don't know if I have had F18 FDG scan but scans I have had were all PsMa Ga68 PET / CT scans and I was told the CT part of scan did not show anything that was not in PET part of scan and nobody has said I have Pca that has low or no PsMa avidity where Lu177 will not work. I had Psa 25 before beginning Lu177 last Nov, and then after No 3 Lu177 shot I began Xtandi, and then Psa was 1.7, and lower after No 4 Lu177, Psa went lower and now Psa is about 0.4 ( 3weeks ago ) and seems like I am getting a good response. I saw the Hoffman report from PeterMac about patients with non PsMa avid Pca, and I am not sure what exactly could be done for them. But I also saw where I could get more Lu177 in future if / when Psa rises again if PsMa scan shows avidity so that instead of getting maybe 14 months of life extension I might get 3.5 years. What are your thoughts? Patrick Turner.
  25. Barree

    THERANOSTICS

    THERA-NOSTICS Targeted Theraputic LU177- PSMA -617 DIAGNOSTIC COMPANION GA68-PSMA 11 - Pet/CT PSMA -Many prostate cancer cells have a protein on the surface called PS MA (prostate specific membrane antigen). PSMA 6I7 Ligand is a small peptide (molecule ) with a high binding affinity for PSMA. When injected into the bloodstream it looks for the PSMA exuded on the surface of the prostate cancer cells and bonds to it. This ligand not only bonds to PSMA – it also bonds to Lutetium 177 and Gallium 68 (Ga 68). Gallium 68 is a radioactive isotope. From the time it is made radioactive in the hospital laboratory, it only has a half life of 68 minutes. Lutetium177 is also a radioactive isotope which when made radioactive has a half life of 6.64 days. To determine if you are suitable for Lutetium treatment Firstly a Gallium 68 scan is done Gallium 68 is mixed with the PSMA 11 Ligand, this blend is then injected into the bloodstream. The mixture circulating through the bloodstream is attracted to the protein and starts to build up on the surface of the cancer cel ls (in much the same way as iron filings are attracted to a magnet). If there is no PSMA on the cancer cells – you are NOT considered to be PSMA Avid - the Ligand /Gallium 68 blend will just keep circulating and without any PSMA to adhere to, it will be passed in your urine. When the scan is done – there will be nothing to see – so if you are given a dose of Lutetium 177 / ligand blend it too will do nothing, i t will just pass through the bladder and be excreted with your urine. As the Lutetium177/ Ligand blend will have no PSMA to build up on, you will NOT be considered suitable for treatment with Lutetium177. If you are PSMA avid The Ligand /Gallium 68 blend wi ll keep circulating and be attracted to the protein on the surface of the cancer cells and continue to build up on the surface. This will show up on the scan so the location of the PSMA avid cancer cells can be seen. In this case you maybe suitable for treatment with Lutetium177 but suitability still depends on the results of an FDG scan. Secondly a F18 FDG (Glucose ) scan is done If there is no PSMA on the surface of the cancer cells, the Ga68 scan will show nothing but there could still be cancer present – cancer which is not showing up. This is why it is important to have a F18 FDG (Glucose ) scan. This scan can show cancer which does not exude PSMA and in this case, treatments other than Lutetium 177 would have to be considered. When the two scans do not show prostate cancer in the same position, the scans are considered to be discordant - in which case you are not considered to be a suitable candidate for treatment with Lutetium177 - it just won’t work. When you receive a Lutetium177 injection — it starts circulating through the bloodstream, building up on the protein on the surface of the prostate cancer cells and starts killing the cells beneath the protein. The radiation from this (Lu-PSMA) beta mixture only penetrates about 1mm ,so it will not damage the surrounding non-cancerous tissue. It keeps working flat out for approx 7 and a bit days, and then slowly ceases working over the next few weeks as the radioactivity of the Lutetium177 decays Further Ga68 Scans will show the results of the Lutetium177 treatment.
  26. DesG

    Epigenetics research shows great promise

    Hello Tony, just on the epigenetics/ risk prediction. I now have mets in the spine and due to start hormone therapy and chemo (due to see oncologist 24th October. Where, or, who can refer me to to have my genome tested? As far as you are aware, is this proposed treatment the best that is out there. I've heard about work being done by Louise Emmett, but I believe that this is only if chemo/hormone treatment has failed?
  27. Chask

    Boosting immunity

    Patrick, thanks for your comments. I always read your posts with great interest. I think we are on similar paths, though you are a bit ahead of me on this journey. I also accept that while I am reasonably happy with my level of fitness (for my age), I have no doubt you are also well ahead of me on that front. It is very encouraging to see your great results with Lutetium. I only know one other person who underwent Lu treatment. He had 4 sessions, at great personal cost and regrettably it was not effective and he died fairly recently. Also interested to see that you are now on Xtandi having previously had Zytiga. I thought that was not allowed under PBS guidelines, but then I am on Zytiga prior to having Chemo, and that is also not permitted under the PBS, but the Onco’s seem to be able to plead special circumstances. I see my Onco in 4 weeks time and although my PSA has remained low, I think I may ask for another scan, CT at least, and maybe also PSMA. Had the last one 12 months ago and it showed one met on my scapula and a likely one on a lymph node. I am presently experiencing pain in my right hip, but only after I have walked about 1km. GP suggests arthritis, but Physio says my pelvis is misaligned. My wife who has much experience with arthritis thinks it might be sciatica as it extends down my leg. A scan may reveal the truth. Thanks again for your comments. I have an archeologist friend who was commissioned to study the rock formations under Parliament House. I will ask him if he has seen the drain. chas
  28. This video today is about weight training for men on hormone therapy for prostate cancer. Hormone therapy is also called 'Androgen Deprivation Therapy' (ADT) because it robs a man of androgens. The main androgen is testosterone. Androgens fuel prostate cancer. And a reminder that we have a few videos of our own on the JimJimJimJim channel: https://www.youtube.com/jimjimjimjim/videos The Prostate Cancer Research Institute (PCRI) is an important source of information for about prostate cancer for patients, families, and the medical community. As part of their mission to empower men and their caregivers they make YouTube videos.
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