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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 th
  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
  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 gradua
  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, a
  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 ot
  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
  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 do
  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), Lup
  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
  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
  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 w
  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 yo
  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 su
  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 fro
  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. Psyc
  20. 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
  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 hel
  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 Benefi
  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,
  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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