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  1. Today
  2. The problem with Lu177 is that a patient may initially have PsMa-Ga68 scans which show Lu177 should work well, but then there is mild reduction of Psa and a Pca progression. The docs at Theranostics Australia said that if my Psa bounced back up early after going down that Brca2 test should be done and PARP inhibitors used. But for me, it looks like I got a good response with Lu177, see my Psa graph at http://www.turneraudio.com.au/Patrick-other-concerns.html I bet I am Brca2 positive because my father's mother died of Oa, my father died of melanoma, a sister died of Oa, and other sister got Brca but is alive and well at 75, 10 years later. I watched a friend die earlier this year from mutant forms of Pca that sprang up in his liver, even though previous chemo had removed kidney lesions. He had very poor short response to RP, salvation RT, ADT, and Cosadex added to ADT boosted Psa from 7 to 40. He lasted less than 3 years after diagnosis at 57. I was told that taking Enzalutamide during and after Lu177 would make Lu177 more effective, so I am still taking Enzalutamide after beginning it right after No 3 shot of Lu177. Docs said previous chemo (which failed ) would have re-sensitized my Pca to drugs such as Abiraterone or Enzalutamide where they had failed before chemo. I cannot be sure what is working now, but my Psa graph indicates a good result. Nobody has said I have mutant Pca, so all I can say is that I'm lucky. Patrick Turner.
  3. Patrick Turner

    Uncertainty, QOL

    I have never known there was a mobile telephone app that could measure Psa, but I have never needed to use a mobile phone. I began to insist that I have Psa test included in my yearly check up for GP since age 52, approx. It would have been impossible for me or my GP to have not noticed a large rise of Psa. But at 62 in 2009 I had a Psa of 5, and a biopsy in 2009 showed a Gleason 9, and it was inoperable in 2010. So I was diagnosed much too late to have a successful RP. My Psa graph can be seen at http://www.turneraudio.com.au/Patrick-other-concerns.html I cannot imagine how I would have fared if my Psa was 4,500 at any time. At the moment I have zero symptoms of Pca, Psa = 0.32, and that was only possible after 4 x Lu177 shots. Before Lu177, Psa was 25, countless mets, some in bones were peas sized. I now have Pcs producing 1.3% of Psa before Lu177, not a bad result, but it does not mean it won't rise again. I do get a dry mouth sometimes. I did recently have an adhesion of small intestine to 2010 surgery scar tissue that gave me a real bad gastric blockage needing an op to cut the adhesions. But it looks like I'll fully recover, and can return to cycling 200km a week like I have been doing since 2007. Sure I have Pca, but my QOL has been mostly very good during last 10 years. I think you need a lot of luck plus the best doctors you can afford. All the best for Xmas. Patrick Turner.
  4. Patrick Turner

    My Cancer Journey So Far

    Hi Dave, let us hope your good luck with minimum Pca treatment continues. Keep a close eye on any sudden rise of your Psa. The pics on bike indicate a smoky Glasshouse mountain ride? On 13 Nov, my Psa had dropped to 0.32, indicating Pca activity was 1.3% of what it was before I began Lu177 treatment just over 12 months ago when Psa was 25. The scans have confirmed I have had a good result with Lu177. I'm continuing with permanent ADT, plus enzalutamide. But nearly 3 weeks ago, I had a small intestine blockage that led to The Worst 11 Days in hospital I've ever had, and included to another tummy op where they found part of small intestine had become stuck to previous 2010 surgery scar tissue when an RP was attempted, but failed. Docs looked around my innards and found no sign of any tumours, and no sign of any damage from the RT I have had. I've now survived 10 years since diagnosis. But before hospital visit, I was cycling very well, speed was good, fitness was brilliant, but after 11 days in hospital with non functioning digestive tract I lost 7Kg. It is now a week after leaving hospital and I am eating almost normally, but weight has not yet risen. It has not fallen much either. I might recover fully soon, and if so, I should be able to ride faster because my body volume is 7Litres less, so less wind resistance, and speed up hills should be maybe 5% faster because I'm lighter. BMI is now an unintended 22.0. Today, I met a man of 45 giving blood at my local pathology clinic, and he'd had horrid year after falling off his farm motorbike. A handlebar broke a rib, pushed it inwards, where it lacerated his heart, causing two successive heart attacks. So wearing a flak jacket might be a good idea on a motorcycle. His other problem was after there was some rain at Captain's Flat, (70km east of ACT), and he'd drunk some, without boiling it. He got badly poisoned, not knowing why. Let us hope it rains soon. But BOM says rain is not expected till April, and there's still a lot more bush to burn than already has burned. Many have far worse problems than you or me. Patrick Turner.
  5. ALF

    Uncertainty, QOL

    Greg, thanks for your sincere kind words.
  6. DaveK1200

    My Cancer Journey So Far

    Hi everyone, Just received my latest December 2019 PSA results. Good news... down slightly to 9.6 Here are my last 4 results... March 2019: 14 June 2019: 13 September 2019: 10 December 2019: 9.6 I have never had chemo or radiotherapy. My only conventional treatment was two months of ADT (Zoladex) at the start of 2017. Since then I’ve only been taking my unproven alternatives. Still feeling great and enjoying life. Went for a 5am group ride on Sunday and had a ball. (still shots from my helmet cam attached). I wish everyone a Merry Christmas and a Happy New Year. Kind regards Dave
  7. Yesterday
  8. Hi HC, Just to take the PARP possibility a bit further, I saw a recent reference to a current phase 3 trial in Oz and elsewhere, ('Keylink 010'), combining an immunotherapy drug (pembrolizumab) with a PARP inhibitor (olaparib), based on very promising phase 2 trials. Another trial to consider might be a new PARP inhibitor, pamiparib (BGB 290), which is the subject of a current phase 2 trial. Best wishes, Alan
  9. GregMac

    Uncertainty, QOL

    Alf, My thoughts are with you are you take this journey. I am sure that both myself and others reading your story will all be hoping for the best outcome as is possible. Difficult when we get thrown these curve balls in life that we seem to have little control over. try and stay strong as every day new options for treatment are evolving. Wishing you all the best. Cheers Greg
  10. Well that's disappointing to hear HC. Hoping your last Lu treatment kicks in late and you make a miraculous turnaround while you wait to get into an immunotherapy trial! (My grandfather directed one of the world's first international immunotherapy research units at Queens University in the 1930's and lean to this as our best hope for new, revolutionary genetically-tailored treatments.)
  11. Hi Canook, I have. The oncologist had great hopes because of my gene mutation but it didn’t work. Thanks for the reply. David.
  12. Hi David, Have you tried Olaparib (AZD-2281, MK-7339 trade name Lynparza is an FDA-approved targeted therapy for cancer)?? It is a PARP inhibitor, inhibiting poly ADP ribose polymerase (PARP), an enzyme involved in DNA repair. It acts against cancers in people with hereditary BRCA1 or BRCA2 mutations, which include some ovarian, breast, and prostate cancers. Canook
  13. ALF

    Uncertainty, QOL

    With the fresh memory of those disgusting lesions in my bones and lymph nodes as radiological images and the Path Apps on my phone showing my PSA of 4500, I diagnosed myself with Metastatic Prostatic Cancer. Colleagues quickly recommended an experienced Oncologists. Biopsy of a Lymph Node was worse than the cancer at that moment. The ADT journey started with 2 shots of Firmagon 6 days after the Diagnosis, the pain and swelling of which immediately reminded me what it means by "Treatment is worse than the Disease". 10 days from Diagnosis, I received the first of five Local Radiotherapy to a segment of the Thoracic Spine for Pain due to Nerve Root Compressionn which was the only symptom of my cancer leading to the CAT scan and Diagnosis. Pain settled by 75% in 3 days!! 4 weeks from Diagnosis, first shot of Lucrin, which was Nothing compared with Firmagon. PSA dropped to 850! 5 weeks from Diagnosis, I received the first of 6planned cycles of Docetaxel DTX. Now, Day 9 of Cycle 1 Docetaxel, I have not felt too bad, with migratory bone pain, taste change in the mouth, nail bed pain, fatigue. Anemia from the cancer and DTX is probably distressing me most. My Exercise Tolerance has dropped to what I regarded as disgraceful. Further thought... maybe I have accepted the Diagnosis but have not reconciled with the implications of being sick, buying time, dying of cancer. I read in this forum many real life experiences of Prostate Cancer. Treatment Side Effects are tolerated variably. What I found difficulty at this presumably early stage of my "salvage" treatment is the Uncertainty of Survival and the Uncertainty of the Morbidity from the Disease and Treatment. I do not know what extent of physical limitations will be imposed on me. I certainly do not know if I could accept a Life with the degree and extent of limitatations.
  14. No long story this time round. I’m going to cut straight to the chase. The Lu-177 treatment has stopped working. My PSA has been on a steady increase for the last three months (see the chart above). My last PSMA scan showed the large mets in my spine have stabilised, but not improved. Smaller mets in my spine, clavicle and scapula have improved slightly, as has activity in a lymph node. I had a chat with my Doctor yesterday after the 5th infusion, and he told me a sixth cycle was unlikely to resolve/significantly reduce the mets in my spine. When I asked him if I should pay for a sixth cycle or spend the money on a family holiday, he said “That’s a very difficult question to answer”. So, it looks like I’m going to have to try to get myself on an immunotherapy trial. I’m germ line BRAC2 and my tumours exhibit micro-statellite- instability, so there is at least some chance immunotherapy will work. I’ve decided against Cabazitaxel, as I don’t want to feel sick for months for no real gain. So, my fellow warriors, if you have any advice for future treatment, please let me know. I’m open to pretty much anything. Any advice will be gratefully received. Aside from that, I’d like to wish you all happy holidays and good/better health for 2020. David.
  15. Thank you @GregMac. One issue we do hear is that the general PCa groups don't cater to specific interests, and men leave frustrated. That is not to say face-to-face conversation is at fault; but the participants don't really feel their need is being met. For example younger men get frustrated listening to old fogies. We now run 8 PCa groups a month - from AS all the way to U-60 Advanced Disease and everything in between. As Jim knows, we have had active Aussie participation for years .... Paul Hobson GRHS was a regular in our High Risk/Recurrent/Advanced group when he went through his Lu177 trial. Whether it is virtual or physical, I think we all agree there is no substitute for peer experience.
  16. Appointment last Friday with oncologist locally. Will start salvage radiation treatment late February 2020 after my trip to the states. We had a discussion re possible lymph nodes as well in the pelvic area but have decided to just do the prostate bed at this time. I will have another PSA test mid Jan 2020 and if there has been a further a major lift in level may do a single hormone shot. Heres hoping that post treatment the levels decrease other wise the assumption that its in the prostate bed is wrong and we are back to square one as well as dealing with the outcomes of radiation. Cheers GregMac
  17. Although almost 62, I was 46 when first diagnosed. I would really recommend guys in the age group you mention especially here in Australia to get involved with local support groups. There really is a need to get these people sharing there experiences in group forums. I am working hard with my local group to try and be more diverse not only in age but also cultural backgrounds. It is so powerful when people can speak face to face to share their experiences.
  18. Last week
  19. In recent years, particularly in the US, we have seen an explosion of men diagnosed with de novo advanced prostate cancer, whether metastatic or non-metastatic with lymphatic involvement or disease outside the prostate capsule. Many of these men are younger, late 30's to late 50's, and for them the regular forums do not address several of their more specific concerns. AnCan and UsTOO have come together to host a monthly peer-led virtual support group specifically to address the interests and needs of younger men diagnosed with advanced prostate cancer. The group meets monthly on the 2nd Thursday at 4 pm Pacific and can be joined online or by phone - local access numbers for Australia are available. All our virtual groups are free and drop-in. For more information please visit https://ancan.org/prostate-cancer/ ; joining instructions and a local access number are available at http://www.ancan.org/joining-instructions/. You can also sign up for an e-mail reminder for this and all our other groups at www.ancan.org .
  20. alanbarlee

    Question on Zoladex

    Good news, MAV - thanks for keeping us posted. Could you let us know what mutant genes were the subject of the test, where it was done, and what was the cost? (Genetic testing is likely to grow rapidly in the future). Many thanks, Alan
  21. Jim, a well presented article and a timely reminder of one of the possible side effects of ADT. For those at risk,like me, I think it is worthwhile monitoring my own blood pressure on a very regular basis to ensure it remains within established limits. Cheers, Barree
  22. Mav

    Question on Zoladex

    Haven`t updated since my very first post...Husband is still having Zoladex P.S.A. hasn`t risen or gone down...so nothing has changed since my last post He has been to heart specialist..Heart good well as good as expected Also Arthritis specialist his Rheumatoid Arthritis also under control He is a bit Anemic only 2 points below so nothing to worry about apparently..Feb injection will be his 6th,, Next injection is not till Feb 2020...so all is looking good at moment... He had test for some mutant gene...but doesn't have the required Gene for that treatment...so that is off list for future So I am optimistic now for a good future ,we will make our 50th Anniversary in 3 years,,,,
  23. Jim Marshall (not a doctor) said ... Cardiovascular If you know the term 'cardiovascular', you probably know two major things - heart attack and stroke. A fuller list includes: Abnormal heart rhythms, or arrhythmias Aorta disease and Marfan syndrome Congenital heart disease Coronary artery disease (narrowing of the arteries) Deep vein thrombosis and pulmonary embolism Heart attack Heart failure Heart muscle disease (cardiomyopathy) Heart valve disease Pericardial disease Peripheral vascular disease Rheumatic heart disease Stroke Vascular disease (blood vessel disease) Risk factors Risk factors for cardiovascular disease that you can change: Tobacco smoking Not enough physical activity Poor diet Excessive alcohol consumption. Risk factors your doctor can find: High blood pressure High blood cholesterol Being overweight or obese Having diabetes People with diabetes have twice the risk of developing cardiovascular disease. The rate of stroke can be up to five times greater, and prevalence of heart attack up to ten times greater, for people with diabetes. There are other special conditions your doctor may identify. For instance, for me personally, unless I work at it, I find myself with low salt levels which gives a much higher heart attack risk. Hormone therapy (androgen deprivation therapy, ADT) It is a fact of life for men with prostate cancer that is know to be, or thought to be, out of the prostate, that in many treatments your doctor may recommend hormone therapy. Simply, prostate cancer will use testosterone as a food. Hormone therapy stops your body producing testosterone.Your treatment may include just one period of hormone therapy with radiation. For many men in this group, however, the prescription is hormone therapy for the whole of your life. Types of hormone therapy in this study Hormone therapy mostly used with radiation, or to live long, fits into two groups: Firmagon Firmagon (degarelix) is the only member of the GnRH antagonists currently available (as of 8 December 2019). The rest GnRH agonists include: Zoladex (Goserelin), Lupron (leuprorelin), Eligard (leuprolide), Lucrin (leuprorelin acetate), Suprefact/Suprecor (buserelin), Synarel (nafarelin), histrelin (Supprelin), Suprelorin/Ovuplant (deslorelin), Triptorelin (diphereline) The choice if you are at risk of cardiovascular disease. Simply, the authors find Firmagon (degarelix) to be a better choice if you have cardiovascular risk. Most important is that the authors worry that specialist doctors might not be finding out from your GP if you do have cardiovascular risk before starting hormone therapy. Problems with Firmagon (degarelix) Convenience for patient. A Firmagon injection must be given every 28 days. Other ADT formulations offer, besides every 28 days, 84 days, 168 days, and even longer. Convenience for doctor. Mixing the Firmagon injection takes about 15 minutes. Injecting takes several minutes, and there are special rules. Some other ADT formulations are much more straight forward. Pain. Where the injection goes in. For me pain does not start until day 2. Flu-like symptoms. I know this is a rare symptom because for the past 4 years I have been on Firmagon I have had the opportunity to talk to many men on this drug, and only one man has reported this - me! On days 2, 3 and sometimes longer, I feel crook! Oh well - life wasn't meant to be easy! ... end Jim Int J Clin Pract. 2019 Nov 22:e13449. doi: 10.1111/ijcp.13449. [Epub ahead of print] Cardiovascular Risk with Androgen Deprivation Therapy. Rosenberg MT1.In LibraryGet PDF Author information Abstract BACKGROUND: From the primary care perspective, many urologists and oncologists appear to be ignoring an FDA warning to assess patients' cardiovascular (CV) risk before instituting androgen deprivation therapy (ADT) with gonadotropin-releasing hormone (GnRH) agonists. A growing body of data suggests an association between androgen deprivation therapy (ADT) and CV/cardiometabolic risk, particularly for GnRH agonists. METHODOLOGY: The author examined available evidence regarding CV side effects with GnRH agonists and antagonists to determine what urologists, medical oncologists, primary care physicians (PCPs), and patients need to know about these risks. RESULTS: Data are inconclusive and somewhat conflicting - both low testosterone and testosterone replacement have been associated with elevated CV risk, for example. But the distinction between GnRH agonists and antagonists is becoming clearer, as agonists appear to be more strongly linked with CV risk, perhaps due to the transient testosterone surge they cause upon administration. Moreover, adverse CV events associated with GnRH agonists can emerge relatively quickly, within weeks to months. Conversely, two studies show that GnRH antagonists may significantly reduce CV risk compared to GnRH agonists. CONCLUSIONS: Both GnRH agonists and antagonists carry some degree of CV risk. Although the risk appears to be lower with GnRH antagonists, urologists and oncologists should communicate with PCPs to determine patients' baseline CV risk levels before implementing ADT with either type of agent. © 2019 John Wiley & Sons Ltd. KEYWORDS: GnRH antagonists; androgen deprivation therapy (ADT); cardiovascular risk; gonadotropin-hormone releasing (GnRH) agonists; myocardial infarction; prostate cancer; stroke PMID: 31755635
  24. Tim Does this help: https://ironmanregistry.org/patients/
  25. This looks really interesting and I would love to be involved but after following several links I am still unsure how to register for it. Can you provie any guidance on the registration process? Thanks, this is very encouraging news.
  26. Another wonderful global initiative! Thanks Jim & Tony for sharing the site details and keep up the great work...your vigilance offers hope to many! I, for one, will be registering with Ironman to share my advanced PCa journey via this study group having recently met their criteria (recurrent PSA post-RARP > 0.2 micrograms). Canook
  27. Jim Marshall (not a doctor) said ... Movember and others have started a new way to study prostate cancer. Clinical trials usually focus on one thing and just answers one question - does a new pill work, perhaps, and gathers only the info needed to answer this question. The selected group of patients is just big enough to be sure of the answer. Once that trial is over, that's generally it. The Ironman registry, on the other hand, enrolls men and follows their complete journey, mostly from diagnosis with metastases. Ironman gathers as much information as possible about all things that may affect a man's journey. They collect information from the men and their doctors. Researchers will be able to answer many questions over the next few years by looking at the information (including blood samples) on the 5,000 participants. Executive team member Tony Maxwell has been liaising with Movember about Ironman on our behalf for a few years now, and it is exciting to see it coming into being. ... end Jim The video is not on this site. If you click on the link, you will be taken to a site where we do not control the content. So, please be careful about what you read there, and ask your doctor about anything you read. You may need to subscribe to the site to view the article. If the site is temporarily or permanently unavailable, you may receive an error message. https://www.urotoday.com/video-lectures/prostate-cancer-foundation-2019/video/mediaitem/1567-the-ironman-an-international-registry-for-men-with-advanced-prostate-cancer-dana-rathkopf.html?utm_source=newsletter_7228&utm_medium=email&utm_campaign=voices-sharing-the-clinical-impact-from-the-26th-prostate-cancer-foundation-scientific-retreat
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