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  1. I was diagnosed with an aggressive prostate cancer (Gleeson 10) in June 2017. Following the diagnosis I was immediately put on ADT using Zolodex and have been on it continuously since. I have also undergone 8 weeks of radiation therapy. To date treatment has been successful and I have had a PSA level of 0.02 for about the last 18 months. My problem is that I have uncontrollable mood swings in which I become quite angry and short tempered. I also have thoughts that have no basis in reality during these swings which is putting considerable pressure on my family. My trouble is that I can feel the mood change coming on but do not seem to be able to control it. I have considered seeking professional psychological/psychiatric help but before I do was wondering if anyone on this forum has experienced this whilst on ADT and if so how do you overcome or control them. Any advice would be welcome.
  2. 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
  3. There are five Thursdays in this month. Each Thursday I aim to present one of the YouTube videos from the PCRI. Hormone therapy, also called androgen deprivation therapy (ADT) keeps most of us alive by robbing the body (and the prostate cancer) of androgens. The main androgen is testosterone. When our bodies are without testosterone, some men experience hot flashes (also called hot flushes). The experience varies from man to man. Some men have no hot flashes. Others have their life very affected. Personally, my hot flashes were mild at first, and gradually faded to undetectable over a few years. In this video, PCRI’s Executive Director, Mark Scholz, MD, discusses various methods for managing hot flashes that occur in men who are undergoing hormone therapy for 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.
  4. As mentioned in another thread I started Lucrin Depot quarterly injections in March 2017. I had my most recent one last Monday. Previous thread I've had hot flushes the whole time since 2017 except for a few months when I was taking Androcur (stopped taking it in April this year). I've noticed over the last few months that the flushes have become noticeably longer-lasting and 'wetter' but, perhaps, not as frequent (still have at least 6 or so every 24 hour more often in bed). Also on occasion a flush was definitely brought on by an anxious or stressful thought. For example, about 2am this morning in bed, I was thinking about some gardening my wife and I had done the previous afternoon. There's a slight slope in the garden and I had a sudden picture of my wife falling down. This instantly started a vigorous flush. The flushes are not always associated with anxiety but I was just wondering if a discussion of a correlation between flushes, ADT and anxiety has ever come up?
  5. I previously posted this in another thread, but it doesn't seem to have gained a response, so I am re-posting in this forum. I came upon a reference to HMB, or beta-Hydroxy beta-Methylbutyrate Monohydrate. It appears that this compound, derived from the amino-acid Leucine, may be useful in counteracting the effects of muscle wastage brought on by ADT or in my case chemo. Does anyone have any additional information on this Dietary supplement ?? I will ask my med onc about it on Thursday when I have my next chemo, and it seems to be readily available either alone or in combination with other amino acids / proteins from a number of the body building supplement shops. Any thoughts ???
  6. I came across this interview on Urotoday. A good short synopsis of the current state of research on treating metastatic disease. I've found Urotoday to be a great source of science/research based information. https://www.urotoday.com/video-lectures/prostate-cancer-foundation-scientific-retreat/video/mediaitem/1074-embedded-media2018-11-10-04-08-11.html You should not need to register to see the video. I have registered (it's free) and receive an informative weekly email. I have not received any spam.
  7. Popeye

    An Update from Lee aka Popeye

    This is for members who may be interested in my little adventures with this disease. Since my salvage prostatectomy, cystectomy, appendectomy back in November 2014 my PSA remained undetectable until 2016 and then started rising. Over the past 18 months the PSA was doubling approx every four months. In March 2017 when my PSA was 0.26 I had a PSMA gallium 68 scan that was negative so I was back to just hanging about. My PSA recently hit 1.8 and I have just returned from Townsville after another PSMA scan that returned positive results. The news was good and bad news. Bad news because there were two mets discovered with another area suspicious. Good news because my mind was expecting much more invasion than was found. I have one 10mm tumour adjacent to my S3 vertebrae and another 10mm tumour adjacent to my rectum. The suspicious reaction was in an area near my left ureter of my urinary diversion. Interestingly no bone reactions just tissue related stuff. Members of this forum may be surprised that I had almost made up my mind not to have any treatment based on the results of the scan if it was real bad news. My previous experience on eligard ADT and search information on chemo that I have read about led me to that decision. I was not looking forward to a downward spiral in my quality of life on these treatments. I figured my QOL at the moment was reasonable and the fact that I will turn 71 in September will do me nicely thank you and I was not looking forward to senility with adt and chemo brain. Discussion with my urologist in Townsville has changed my attitude somewhat. He was sympathetic to my arguments but has suggested I go back on ADT using firmagon which is different than the luprons etc. The downside is of course the injections are monthly and painful for some patients, he then gave me two things to ponder about while making a decision. Firstly he guaranteed that firmagon would put these lessions to sleep for at least two years and secondly I could always choose to stop the firmagon at any time. So I have re-thought this matter since my visit and the fact that the lessions are small in number I have decided to give firmagon a go and see where it leads to. On a related matter the patient travel subsidy scheme recently declined my application for this latest visit to Townsville. Their reason for this decision is that the Mackay Base Hospital now has a resident urologist and my treatments should be done locally. I have appealed this decision and am hoping to take this further. While I have no issues personally with the resident doctor my preference is to stay with my urologist in Townsville as we have built up a mutual respective doctor patient relationship. He was the surgeon who demonstated great skill in my salvage surgery in 2014 and has carried out numerous other procedures prior to and since that time. My belief is that this medical relationship should continue for the betterment of my chronic condition. While I will be able to afford to travel the 1000km return trip and pay for accomodation there is sure to be other chronically ill patients who will not be able to do so. I accept that the public system has the beaurocracy to rigidly adhere to rules and that I am a public patient now. The original reason I went to this doctor was because I was then in private health and the Base Hospital in Mackay did not have a resident urologist at the time. Thank you for reading this. Popeye
  8. Abiraterone (Zytiga) is approved for supply on the Australian PBS under the following conditions: Authority Required Castration resistant metastatic carcinoma of the prostate Clinical criteria: • The treatment must be in combination with prednisone or prednisolone, AND • The treatment must not be used in combination with chemotherapy, AND • Patient must have failed treatment with docetaxel due to resistance or intolerance; OR • Patient must be unsuitable for docetaxel treatment on the basis of predicted intolerance to docetaxel, AND • Patient must have a WHO performance status of 2 or less, AND • Patient must not receive PBS-subsidised abiraterone if progressive disease develops while on abiraterone, AND • Patient must not have received prior treatment with enzalutamide; OR • Patient must have developed intolerance to enzalutamide of a severity necessitating permanent treatment withdrawal. (Current 7 June 2017. Check pbs.gov.au for the latest version.) So, for most men, only after treatment fails with the chemotherapy docetaxel. We can assume that the Australian supplier of abirateone (Janssen) will present the results of the latest STAMPEDE and LATITUDE trials to the government's expert committee (the PBAC) suggesting that abiraterone be made available to men on the PBS earlier in treatment. I am not a doctor, but these trial results are reported as being very strong. So it will come down to Janssen agreeing a pricing package with the government, if they can.
  9. Jim Marshall (not a doctor) said ... Earlier results When standard hormone therapy is no longer holding the cancer in check, adding abiraterone (always plus a steroid) delays progression of the cancer and extends life. These LATITUDE results Newly diagnosed metastatic men had: standard hormone therapy OR standard hormone therapy + abiraterone + a steroid The men who started abiraterone and hormone therapy at the same time took longer for their disease to progress, and survived longer. Standard hormone therapy Zoladex (Goserelin), Lupron (leuprorelin), Eligard (leuprolide), Lucrin (leuprorelin acetate), Suprefact/Suprecor (buserelin), Synarel (nafarelin), histrelin (Supprelin), Suprelorin/Ovuplant (deslorelin), Triptorelin (diphereline) and Firmagon (degarelix) ... end Jim N Engl J Med. 2017 Jun 4. doi: 10.1056/NEJMoa1704174. [Epub ahead of print] Abiraterone plus Prednisone in Metastatic, Castration-Sensitive Prostate Cancer. Fizazi K1, Tran N1, Fein L1, Matsubara N1, Rodriguez-Antolin A1, Alekseev BY1, Özgüroğlu M1, Ye D1, Feyerabend S1, Protheroe A1, De Porre P1, Kheoh T1, Park YC1, Todd MB1, Chi KN1; LATITUDE Investigators. Author information Abstract Background Abiraterone acetate, a drug that blocks endogenous androgen synthesis, plus prednisone is indicated for metastatic castration-resistant prostate cancer. We evaluated the clinical benefit of abiraterone acetate plus prednisone with androgen-deprivation therapy in patients with newly diagnosed, metastatic, castration-sensitive prostate cancer. Methods In this double-blind, placebo-controlled, phase 3 trial, we randomly assigned 1199 patients to receive either androgen-deprivation therapy plus abiraterone acetate (1000 mg daily, given once daily as four 250-mg tablets) plus prednisone (5 mg daily) (the abiraterone group) or androgen-deprivation therapy plus dual placebos (the placebo group). The two primary end points were overall survival and radiographic progression-free survival. Results After a median follow-up of 30.4 months at a planned interim analysis (after 406 patients had died), the median overall survival was significantly longer in the abiraterone group than in the placebo group (not reached vs. 34.7 months) (hazard ratio for death, 0.62; 95% confidence interval [CI], 0.51 to 0.76; P<0.001). The median length of radiographic progression-free survival was 33.0 months in the abiraterone group and 14.8 months in the placebo group (hazard ratio for disease progression or death, 0.47; 95% CI, 0.39 to 0.55; P<0.001). Significantly better outcomes in all secondary end points were observed in the abiraterone group, including the time until pain progression, next subsequent therapy for prostate cancer, initiation of chemotherapy, and prostate-specific antigen progression (P<0.001 for all comparisons), along with next symptomatic skeletal events (P=0.009). These findings led to the unanimous recommendation by the independent data and safety monitoring committee that the trial be unblinded and crossover be allowed for patients in the placebo group to receive abiraterone. Rates of grade 3 hypertension and hypokalemia were higher in the abiraterone group. Conclusions The addition of abiraterone acetate and prednisone to androgen-deprivation therapy significantly increased overall survival and radiographic progression-free survival in men with newly diagnosed, metastatic, castration-sensitive prostate cancer. (Funded by Janssen Research and Development; LATITUDE ClinicalTrials.gov number, NCT01715285 .). PMID: 28578607 This extract can be found on http://PubMed.com, and is in the public domain. On PubMed.com there will be a link to the full paper (often USD$30+, sometimes free). Any highlighting (except the title) is not by the author, but by Jim Marshall. Jim is not a doctor.
  10. Jim Marshall (not a doctor) said ... Earlier STAMPEDE results An earlier version of the STAMPEDE trial looked at men newly diagnosed with metastatic prostate cancer. One group of men was given hormone therapy, then chemotherapy when that was not enough to control their cancer. The other group started with hormone therapy plus chemotherapy. Men survived 22 months longer if they started with hormone therapy + chemotherapy. These STAMPEDE results Mostly newly diagnosed men who needed hormone therapy had: standard hormone therapy OR standard hormone therapy + abiraterone + prednisolone (Abiraterone is always given with a steroid. Prednisolone is a steroid.) The men who started abiraterone and hormone therapy at the same time took longer for their disease to progress, and survived longer. Standard hormone therapy Zoladex (Goserelin), Lupron (leuprorelin), Eligard (leuprolide), Lucrin (leuprorelin acetate), Suprefact/Suprecor (buserelin), Synarel (nafarelin), histrelin (Supprelin), Suprelorin/Ovuplant (deslorelin), Triptorelin (diphereline) and Firmagon (degarelix) ... end Jim N Engl J Med. 2017 Jun 3. doi: 10.1056/NEJMoa1702900. [Epub ahead of print] Abiraterone for Prostate Cancer Not Previously Treated with Hormone Therapy. James ND1, de Bono JS1, Spears MR1, Clarke NW1, Mason MD1, Dearnaley DP1, Ritchie AWS1, Amos CL1, Gilson C1, Jones RJ1, Matheson D1, Millman R1, Attard G1, Chowdhury S1, Cross WR1, Gillessen S1, Parker CC1, Russell JM1, Berthold DR1, Brawley C1, Adab F1, Aung S1, Birtle AJ1, Bowen J1, Brock S1, Chakraborti P1, Ferguson C1, Gale J1, Gray E1, Hingorani M1, Hoskin PJ1, Lester JF1, Malik ZI1, McKinna F1, McPhail N1, Money-Kyrle J1, O'Sullivan J1, Parikh O1, Protheroe A1, Robinson A1, Srihari NN1, Thomas C1, Wagstaff J1, Wylie J1, Zarkar A1, Parmar MKB1, Sydes MR1; STAMPEDE Investigators. Author information Abstract Background Abiraterone acetate plus prednisolone improves survival in men with relapsed prostate cancer. We assessed the effect of this combination in men starting long-term androgen-deprivation therapy (ADT), using a multigroup, multistage trial design. Methods We randomly assigned patients in a 1:1 ratio to receive ADT alone or ADT plus abiraterone acetate (1000 mg daily) and prednisolone (5 mg daily) (combination therapy). Local radiotherapy was mandated for patients with node-negative, nonmetastatic disease and encouraged for those with positive nodes. For patients with nonmetastatic disease with no radiotherapy planned and for patients with metastatic disease, treatment continued until radiologic, clinical, or prostate-specific antigen (PSA) progression; otherwise, treatment was to continue for 2 years or until any type of progression, whichever came first. The primary outcome measure was overall survival. The intermediate primary outcome was failure-free survival (treatment failure was defined as radiologic, clinical, or PSA progression or death from prostate cancer). Results A total of 1917 patients underwent randomization from November 2011 through January 2014. The median age was 67 years, and the median PSA level was 53 ng per milliliter. A total of 52% of the patients had metastatic disease, 20% had node-positive or node-indeterminate nonmetastatic disease, and 28% had node-negative, nonmetastatic disease; 95% had newly diagnosed disease. The median follow-up was 40 months. There were 184 deaths in the combination group as compared with 262 in the ADT-alone group (hazard ratio, 0.63; 95% confidence interval [CI], 0.52 to 0.76; P<0.001); the hazard ratio was 0.75 in patients with nonmetastatic disease and 0.61 in those with metastatic disease. There were 248 treatment-failure events in the combination group as compared with 535 in the ADT-alone group (hazard ratio, 0.29; 95% CI, 0.25 to 0.34; P<0.001); the hazard ratio was 0.21 in patients with nonmetastatic disease and 0.31 in those with metastatic disease. Grade 3 to 5 adverse events occurred in 47% of the patients in the combination group (with nine grade 5 events) and in 33% of the patients in the ADT-alone group (with three grade 5 events). Conclusions Among men with locally advanced or metastatic prostate cancer, ADT plus abiraterone and prednisolone was associated with significantly higher rates of overall and failure-free survival than ADT alone. (Funded by Cancer Research U.K. and others; STAMPEDE ClinicalTrials.gov number, NCT00268476 , and Current Controlled Trials number, ISRCTN78818544 .). PMID: 28578639 This extract can be found on http://PubMed.com, and is in the public domain. On PubMed.com there will be a link to the full paper (often USD$30+, sometimes free). Any highlighting (except the title) is not by the author, but by Jim Marshall. Jim is not a doctor.
  11. This video is about a treatment for men who already have prostate cancer. It is about adding an occasional testosterone boost to regular drug therapy to treat prostate cancer. Dr Sam Denmeade reports on encouraging trials of this approach. It is 56 minutes long and has Closed Captions (Cc) for the hard of hearing. Thanks to Rick Davis of the Answer Cancer Foundation for allowing us to post this video. Access the whole presentation, including introductions, questions and answers, at: https://www.ancan.org/bat-presentation The questions and answers begin at about 1hour 4minutes.
  12. Jim Marshall (not a doctor) said ... New agreement At the recent Prostate Cancer Research Institute (PCRI) conference I was fortunate to meet with Jan Manarite, Executive Vice President of Prostate Cancer International. The "New" Prostate Cancer Infolink is their corporate website. In the past we have republished individual articles from their site, with permission. Jan has been kind enough to now give us blanket permission to republish any article, with proper attribution. We are grateful to Jan and to Prostate Cancer International for this kindness. This article Men who were on hormone therapy (ADT) for 6 years took a long time to recover testosterone, if they did at all. ... end Jim From The "New" Prostate Cancer Infolink: After long-term ADT … recovery normal of hormonal function? Posted on September 22, 2016 by Sitemaster 2 Votes A group of Spanish clinical researchers have reported recent data from a small study designed to address an unanswered question about the recovery of (relatively) normal hormonal function after completion of androgen deprivation therapy (ADT). Planas et al., writing in the Scandanavian Journal of Urology, report data from a cohort of 40 patients who: • Were all treated with long-term ADT for locally advanced or metastatic prostate cancer • Had an average (mean) age of 71.5 years • Were treated with ADT for an average duration of 74.6 months (i.e., about 6 years) and then • Stopped their ADT therapy without any consequent rise in their PSA level The men were then followed for an average of another 36.5 months (about 3 years), and their serum testosterone (T) and serum luteinizing hormone (LH) levels were determined at 6-monthly intervals after cessation of the ADT. Here is what the research team reported: • At 18 months of follow-up, ◦ All patients had recovered normal levels of LH. ◦ 38 percent of patients still had castrate levels of serum T (< 50 ng/dl). • Based on a multivariate analysis ◦ Only time on ADT was correlated with recovery of serum T levels > 50 ng/ml (p = 0.031) ◦ Neither age nor clinical stage at start of ADT showed statistical correlation to recovery of serum T levels > 50 ng/ml • Average time for recovery of a serum T level of > 50 ng/ml was ◦ 14.5 months in men treated with ADT for < 60 months ◦ 29.3 months in men treated with ADT for > 60 months The authors conclude that: Age did not correlate with testosterone recovery in a group of elderly prostate cancer patients in whom ADT was stopped. Testosterone recovery after ADT cessation was significantly correlated with time under ADT treatment. So what this tells us is that a significant percentage of men on long-term ADT are probably never going to regain anything approaching normal serum T levels on their own after stopping ADT. We are aware of a small number of men who, after being on long-term ADT for several years, and stopping, then took testosterone replacement therapy (TRT) to regain normal serum T levels. That strategy clearly comes with a significant level of risk in men who were originally being treated with ADT for advanced or metastatic prostate cancer. Might that be an acceptable risk for some patients? Well, … probably only an individual patient could answer that question — and only with regard to himself. Original article on the "New" Prostate Cancer Infolink site https://prostatecancerinfolink.net/2016/09/22/after-long-term-adt-recovery-normal-of-hormonal-function/
  13. Treatment of metastatic prostate cancer has changed recently. In the past doctors used to use hormone therapy (ADT) at first, then wait until the disease was very progressed before giving chemotherapy with Taxotere (Docetaxel). The reason for the change? Professor Christopher Sweeney reported on a trial he led (CHAARTED). In CHAARTED, the researchers (an international team of medical oncologists) showed that starting BOTH chemotherapy and ADT at the beginning of treatment gave men a longer life. Yesterday (Sunday, 4 Sep 2016), members of your Executive Committee were invited to be the audience for an video interview of Christopher Sweeney and his Australian colleague, Professor Gavin Marx, by Anthony Lowe, PCFA CEO. Tony Maxwell, Alan Barlee and Nev Black and I were able to attend. (Paul Hobson had to miss out because of treatment.) Being able to question world leaders in advanced prostate cancer treatment was a privilege, and we were able to ask several questions men have raised with us in the past. I have been offered first cut of the video footage. I hope to be able to produce two YouTube videos - one the expert interview, the other on key questions men ask about chemo. Watch this space!
  14. At our phone-in meeting last Friday medical oncologist Professor Ken Ho and urologist Dr Ano Navaratnam spoke to us about their clinical trial looking to prevent and reverse the muscle wasting that occurs in men on hormone therapy (ADT). You will recall that the initial pilot phase of the trial is only available in Brisbane, Australia. Details Opportunity to Participate in World First Clinical Trial Are you a male who: • Has Prostate Cancer • On Androgen Deprivation (also known as “Hormones”) • Independent in your activities of daily living You may be eligible for our trial to prevent and reverse muscle wasting that occurs in men on “Hormones” Contact: Dr Irina Oleinikova Study Coordinator Princess Alexandra Hospital Irina.oleinikova@health.qld.gov.au Phone: 3176 2217 or 0402 159 586 Dr Ano Navaratnam Urology Fellow Princess Alexandra and Greenslopes Hospitals, navs_ano84@hotmail.com Supported by: Click here to download this as a PDF; Muscle wasting prevention clinical trial.pdf
  15. " In what seems to be a first, study researchers are saying that they might have uncovered a link between ADT and Alzheimer’s. Their study is small and preliminary and it does not prove a cause-and-effect relationship, but merely shows an association between ADT and Alzheimer’s disease." Click here to read more.
  16. Some men who are diagnosed with prostate cancer have metastases at the time of their diagnosis. Until recently the primary treatment for these men was Androgen Deprivation Therapy (ADT). Since the CHAARTED and STAMPEDE trials, ADT + Chemotherapy (Docetaxel) has become the standard of care for these men. What about ADT + Chemotherapy + Radiotherapy for these men? Maybe. Removal of the primary cancer has been used effectively in other cancers, either using radiation or surgery to increase cancer-specific survival time. "Whether radiotherapy or surgery is of any benefit after early chemotherapy is still very much an open question" for prostate cancer. Mike Scott and Allen Edel of the New Prostate Cancer Infolink suggest that it's something that a patient who is diagnosed at the outset with metatastes should discuss with their radiation oncologist. Click on this link to read the article.
  17. Jim was away in Sydney with a swag of other members representing our group at a meeting with Janssen, the suppliers of the drug Zytiga. As a result of this, Jim asked me to chair our phone in conference in his absence. We had no guest speaker at our gathering which made life a little easier for me as our talks would be based on a round table discussion among members. I had the feeling it might be a bit dull without a guest and members be reluctant to come forward and speak on issues. With this in mind I prepared some topics prior to the meeting just in case. I needn't have worried as right from the beginning we were off and running and I threw my cheat sheet into the bin. The meeting never ran out of steam and everyone contributed some great stuff for contemplation so much so that I decided to contribute this summary. I did not record any of our discussions so what I present here is from hurried notes and memory. It is subject to my interpretation and in some areas may be incomplete or inaccurate for which I apologise in advance. I received 8 apologies (most of which were from the members attending the Janssen meeting). There were 6 participants who took part in our meeting and I hope they were happy with the results of our gathering. The session began with a briefing by me as per my understanding of the meeting with Janssen being attended by the cream of our membership and with what little I knew of the nuts and bolts of that meeting I was only able to offer a broad assumption. Jim, I understand will be responding to members with a full report at some time in the future. Two men gave a report on exercise programs they were attending. One man is participating in a study at St Lucia University that includes dietary analysis and different exercise regimes. He intends to post a report on the program when he is able. However he stated that he might need assistance in getting the report ready for posting and has asked if any of the members would be able to assist. I can pass on contact details to any member willing to help out. The second man is on an exercise program at Deakin University Burwood Campus Melbourne that is oriented specifically to prostate cancer patients. In further talks on exercise programs and the relationship with the application of chemotherapy, the subject of a recent “Catalyst” program was raised. As can be seen in the Catalyst program there is a gym adjacent to the chemotherapy section where patients are encouraged to exercise straight after infusion of their chemo. This is believed to help increase blood flow to assist in the uptake of the chemotherapy drugs more effectively and improve the body's own immune system. Here is the link on Iview. this link It was also raised that jimjimjimjim had a guest speaker a couple of years ago during a phone in called Dr Prue Cormie. The minutes of that meeting can be found by clicking on this link. Also an interesting video talk by Dr Prue Cormie can be found by clicking on this link. [Edit - The Catalyst program featured Professor Rob Newton from Edith Cowan University in Perth. Dr Prue Cormie was previously at Edith Cowan but is now at the Australian Catholic University, Melbourne.] One man gave a report on his treatment involving a small trial using Lutetium 177 which is still ongoing. His initial thought was that about 10% patients have reported excellent results while he feels he has had moderate results with little side effects, mainly a sore throat and dry mouth as the radionuclide targets PSMA cells but also effects saliva glands. An interesting issue caught my ear in this discussion, regarding access to results while on a trial. If my memory serves me correctly, it appears that patients taking part in a blind trial are not given access to any pathology test results while on the trial. This is something I have not considered before, but I can see the point in keeping this information secret during a trial of this sort. However it is something to consider for those looking for trials to volunteer for. Perhaps other members may be able to confirm or deny my limited knowledge on this matter, as for Lutetium 177 more can be read by clicking on this link. A man gave a report on his experience with treatment using docetaxel and recommencement of ADT. His experiences were not good and included peripheral neuropathy particularly in legs ankles and feet, constipation, headaches, nausea and fatigue. This has taken 11 weeks to finally start to resolve since completing chemo. It has brought his PSA back down to an acceptable level though. A man also reported he was diagnosed with radiation cystitis some time ago and experienced bleeding and urine blockages, similar to my experience in 2014. He also was treated with hyperbaric oxygen treatment in a decompression chamber but in his case the treatment was successful. I congratulated him and passed the comment that thanks to his report I can consider a 50-50 success rate in this treatment. A bit unfair from me I know but it was written in jest and I include it here to present as a successful case in the use of this treatment for radiation cystitis. A man reported a rising PSA after intermittent ADT over the past 10 years since initial primary treatment. Recently he has been back on Lucrin but his PSA is doubling monthly. He was not looking forward to being advised to begin chemotherapy before being considered for enzalutimide or zytiga. After much discussion it was suggested that he should approach his GP, urologist or oncologist regarding this matter and perhaps a second or third opinion before any choice is made. The meeting concluded approx 1120 hrs. Lee Gallagher (Popeye)
  18. Paul Edwards

    Help! - Hot flushes

    One of our members has just started ADT and complains "These hot flushes are still coming every 30 minutes 24/7. It's nearly 4am and just been woken up again covered in sweat!" What worked for you when you were battling with hot flushes?
  19. ADT carries with it a heightened risk of depression as well as cognitive effects. The cognitive impact, though, is neither well defined nor consistent. The data collectively suggest that the negative impact of ADT on patients directly (and on their intimate partners indirectly) are greater for younger than older men. Across the array of adverse effects, physical exercise appears to have the greatest potential to address the psychological effects of ADT, both in men who are receiving ADT and in their partners. Donovan KA, Walker LM, Wassersug RJ, Thompson LM, Robinson JW. 2015. Psychological effects of androgen-deprivation therapy on men with prostate cancer and their partners. Cancer [epub ahead of print] 15 September 2015. www.ncbi.nlm.nih.gov/pubmed/26372364 From Richard Wassersug's Life on ADT Blog
  20. Paul Edwards

    ADT negatively affects mood

    Researchers asked prostate cancer patients to fill in an online questionnaire on their mood in relation to the prostate cancer treatments they had received. Their results showed that, compared to patients not on ADT, ADT does indeed negatively affect the mood of men, most notably increasing their sense of fatigue and decreasing their sense of vigor. The authors also asked partners of patients to rate the patients’ moods. The partners reported similar declines in the patient’s mood that the patients reported, but to a greater degree than the patients themselves. Often our partners know us better than we know ourselves. Van Dam D, Wassersug RJ, Hamilton LD. Androgen deprivation therapy’s impact on the mood of prostate cancer patients as perceived by patients and the partners of patients. Psycho-Oncology 2015; [epub ahead of print] 31 August 2015. www.ncbi.nlm.nih.gov/pubmed/26332203
  21. A retrospective study of nearly 17,000 patients has suggested that androgen-deprivation therapy (ADT) is associated with an increased risk for the future development of Alzheimer's disease in men with prostate cancer,. Click here to read a report in the New Prostate Cancer Infolink about the study. Researchers can’t prove a direct cause-and-effect link between ADT and Alzheimer’s in an observational study like this. Some other unknown variable might be influencing the results........ Given that it’s a first-time association in a retrospective analysis, this study helps inform future research but it’s not appropriate at this point to make treatment decisions off of it......... If your doctor has put you on this medication for your prostate cancer treatment, you should continue it. Consult with your physician, but don’t stop taking your medication based on a study like this....
  22. With increasing options to treat advanced prostate cancer, there is no clear agreement on the order in which these treatments should be given. I attach a chart prepared (following the STAMPEDE clinical trial which recommended early ADT and chemotherapy for certain patients) by an American oncologist setting out his view of what is currently best clinical practice in America. In Australia our options are more restricted: Abiraterone and Enzalutamide are only available on the Pharmaceutical Benefits Scheme after chemotherapy and Provenge is not available on the Pharmaceutical Benefits Scheme. Oldtimer's Disease - I can't remember which publication I found this table in. A prize for anyone who can tell me where it came from.
  23. A question for the experts - has anyone seen any information on the relative effectiveness of Lucrin verses Zolodex ?? I have been on intermittent Lucrin injections for 15 years, and its effectiveness seemed to be reducing recently, so we changed to Zolodex plus added Cosudex. I really dislike the Zolodex injections so we have changed back to Lucrin, but I do not want to compromise my treatment and will put up with the Zolodex if it is more effective. Any comments ?? [Moderator - This post has been moved. If you've got a new question, start a new discussion, rather than interrupting an existing discussion.]
  24. In short Jim had 4 years of continuous hormone therapy: 8 months before radiation; 4 months during radiation; and 3 years after the end of radiation. Hormone therapy is also called ADT (androgen deprivation therapy). After 3 years of undetectable PSA, Jim took a break from hormone therapy. This break lasted 2 years, but the PSA started rising again, so Jim is now on hormone therapy again. In detail Click on this sentence to see Jim's full story. If you know how to post on the website, why not post your own story? Or Click on this sentence to be helped to write your own story.
  25. Paul Edwards

    Diabetes and ADT

    Does prostate cancer progress faster for advanced patients with diabetes on ADT? The good news is that diabetes doesn't affect the time to castrate-resistance or the time to death. However, diabetes may speed up the time to metastases Advanced patients on ADT who don't have diabetes may get diabetes as a side effect of ADT. Bottom line: patients on ADT should do whatever is necessary to avoid or control diabetes. From Richard Wassersug's Life on ADT Blog reporting on a recent study: click this link to read the blog article.
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