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  3. My Story

    Thank you Alan,Charles & Bruce for your contribution and advice. I had High dose Brachytherapy not Seeds The team at The Alfred Hospital Radiation Oncology have been 5 star. i Finished 28 sessions of IMRT 2 weeks ago and apart from some lethargy and wanting to P every 20Mins i am doing ok Cheers Sean
  4. My Story

    Sean, Alan has given a very good supportive response so I can't improve on that. As a retired radiation oncologist and fellow member of this Group, I can only say that it seems that you have very good medical advisers. Sorry about the side effects of the ADT but that therapy is necessary, as you know. This is a wonderful Support Group that Jim has set up and manages, and I recommend the monthly teleconferences. Best wishes, Bruce.
  5. My Story

    Alan (Barlee) saved me having to provide a similar explanation of methods of treatment available, recommended, or on the horizon. When you see words he provided liked "olaparib" "PARP inhibitors" "BRCA1 or BRCA2 genes" "PSMA" you can enter these into the internet search box and hopefully get a better understanding what they mean. If you have a great Medical Oncologist he may take the time to explain them to you if he has time. Androgen deprivation medications like Zytiga/abiraterone acetate and Xtandi/enzalutamide are explained here: http://www.theprostateadvocate.com/pdf/Zytiga or Xtandi What is the Difference.pdf Early chemo: http://www.theprostateadvocate.com/pdf/ADT PLUS CHEMOTHERAPY FOR PATIENTS INITIALLY DIAGNOSED WITH METASTASES.pdf ADT Side Effects: http://www.theprostateadvocate.com/pdf/ADT Side Effects.pdf
  6. My Story

    Hi Sean (and Cam), You've presented a very clear and concise account of your prostate cancer journey so far. The only missing item is your latest pretreatment PSA, 6 months and a year on from your first one, from which you can calculate the PSA doubling time - an important piece of the jig-saw. The PET/CT scan identifies not only enlarges structures like lymph nodes, but also whether there is unexpected metabolism happening inside them. You should know that an even more sensitive new scan uses 68-gallium-PSMA, and that this scan is now fairly widely available in the larger population centres. Your relatively young age, the Gleason 9 biopsy, extensive bilateral gland involvement and lymph node metastasis puts you in the advanced / high risk camp (Stage 4), along with many of us in the Group. I would therefore expect that immediate and aggressive treatment would be offered by most oncologists dealing with cases like yours, and that's precisely what you have had / are getting. The brachytherapy (high dose radioactive seeds) targeted the cancer in the gland, and was supported by EBRT (or IMRT) to hit the seminal vesicles and pelvic / lower abdominal lymph nodes and other local sites. The systemic androgen deprivation therapy (ADT) is aimed at nailing any escapees that may have migrated elsewhere (e.g.to bone) by cutting off their supply of testosterone. There are a few things you can consider adding to the excellent Deakin exercise program. One is to exercise daily, combining resistance and aerobic training if you can. The second is to limit your dietary carb intake, which might slow down PCa growth, but which will help to limit hot flushes and night sweats, especially if you avoid them during the evening. Breathable clothing and a fan also help a lot. With diet, it's probably good to give red meat and most dairy a miss, since there's some evidence that they promote PCa growth. A heart-healthy mediterranean diet is a good starting point. If side effects are really bad (and you haven't specified what they are), you could discuss with your oncologist trying a switch in the GHRH agonist your using (e.g. from Lucrin to Zoladex, or to degaralix, which works slightly differently). A possible addition to the palette is a 5-alpha reductase inhibitor (e.g.dutasteride / Avodart), which reduces the enzymic reduction of testosterone to the fuel that PCa really likes - dihydrotestosterone (DHT). Not all oncologists are open to this (mine is), but you might want to raise it with yours. Another important topic for an oncologist discussion is to consider an early start on chemotherapy (docetaxel / Taxotere) - at the start of ADT treatment , rather than waiting for 'castrate resistance' to develop, when your regular PSA tracking eventually fails to respond to lowered testosterone. This approach was announced to the PCa world a couple of years ago on the basis of spectacular trial results, and is rapidly becoming standard of care in cases like yours. Most men (especially younger ones) manage the side effects quite well - but you'll want to discuss that with a medical oncologist. Beyond that there are some excellent new second-line ADT treatments - abiraterone (Zytiga) and enzalutamide (Xtandi) being the most widely prescribed. They each work in a different way, and both are used in conjunction with standard ADT - generally post-chemo at this stage unless you find you can't tolerate the docetaxel, in which case your oncologist may be able to prescribe one of these earlier. There is also an imminent Australian trial coming out of Peter Mac on a new systemic radiopharmaceutical, 199-lutetium-PSMA. You would need to test positive for PSMA (a membrane antigen), and you would get either that treatment or cabazitaxel - a relatively newer chemo drug. It would be good to check this option out with your radio-oncologist, who among other things would need to consider your total radiation load. Depending on specialised genetic testing, if you have one of a number of abnormal genes like BRCA-1 or 2 (also found in some breast cancers), there is a class of targeted therapies called PARP inhibitors (e.g. olaparib), which might form part of your broadside at some point. You could ask your oncologist about the appropriate timing of the tests. That's about all I can think of - but you'll see from the above that you have many proven options from which to weave a longer term treatment strategy with your doctors. Patient empowerment comes from getting educated about your pathology and scan reports (including routinely getting your own copies), as well as plugging in to reliable groups and websites that can begin to update you on current monitoring and treatment options. The objective is not to show your docs how to suck eggs, but rather, to develop a mutually respectful, patient-centred relationship. Most (but not all) doctors will react well to you having put some effort into understanding your disease, and wanting to develop a long term team relationship with them. Keep us in the loop! Best wishes, Alan (Barlee)
  7. My Story

    Hi Sean, my roller coaster PCa ride has done my head in too, but I don't have the stamina to type out all that has happened to me since I was diagnosed as a 43 yo in late Jan this year and now have stage IV PCa. Happy to chat any time 0409 861 754. Cam
  8. My Story

    Hello All 1 year ago today i had a PSA test that came back at 19. I had no idea what this meant. At 54yrs old, PC was the last thing on my mind. I had a Trus biopsy of prostate which came back with suspicious cells but not defined. I then had a CT Scan in Jan that showed PC in more than half of my prostate. I then had a Transperineal prostate biopsy and i was told result was Gleason 9. I then had a Pet scan that showed PC was in lymph nodes. I had no idea what all this meant. Was told i had to have a RP, but i was also refereed to radiation oncologist. Was told i was a candidate for High Dose Brachytherapy followed by 6 weeks of External beam radiation therapy. I seeked 2 more opinions from 2 other Urologists and both advised that either option had the same success rate. I choose radiation treatment. I started on ADT in Feb and had HD Brachytherapy on 11Sep. I have just finished the EBRT. Now its a wait and see situation. My life have changed so much. The side effects from ADT are awful. I have done everything the experts have told me to do but the side effects persist. I will be on ADT for another 2 years. I was invited to be part of a Deakin University research on exercise and supplements for ADT side effects. I accepted and was seen by team last Sunday where they did 4 hrs of test's . Anyhow that's my story so far Cheers Sean
  9. Androcur for Hot Flashes

    Dad was put Bicalutamide first and then given Goserelin two weeks afterwards.
  10. PCRI Annual Harry Pinchot Award

    I would like to publicly thank Chuck for his nomination, of Jim Marshall for the Harry Pinchot Award, prior to the 2017 PCRI Conference. PCRI usually sends reminders, so nominations can be submitted from early July, for the Award. I will remind members, at the appropriate time, so anyone wishing to add support for Jim, for the 2018 Award can do so. I can be contacted at surferscentury@hotmail.com
  11. PCRI Annual Harry Pinchot Award

    Hi Chuck , It is pleasing to know you are supportive of the submission of Jim Marshall as a candidate for the PCRI "HARRY PINCHOT AWARD," this year. It goes without saying that Jim would be a most worthy and deserving recipient of this prestigious award and your support this year, will I trust, encourage members of our group here in Australia to support the recognition of Jim's efforts over many years assisting men like me that have Prostate Cancer. Members, it’s time to show appreciation – let’s get behind Chuck and Neville and nominate Jim Marshall for this year’s PCRI "HARRY PINCHOT AWARD.
  12. PCRI Annual Harry Pinchot Award

    For information of all reading this, the following are the submissions of Nev Black and I to PCRI this year, and will likely be similar next year. This gives you an idea of what YOU can include in your nomination in 2018: From: Charles Maack [mailto:maack1@cox.net] Sent: Wednesday, August 9, 2017 2:12 PM To: 'info@pcri.org' <info@pcri.org> Subject: Candidate from Australia for the 2017 PCRI "HARRY PINCHOT AWARD" To whom may help me with the submission of my choice for consideration for the 2017 PCRI “HARRY PINCHOT AWARE.” In not having information as to address, phone number, etc., regarding my candidate for consideration, Jim Marshall of Australia, I must seek your support to include my submission supporting this OUTSTANDING candidate for the 2017 PCRI “HARRY PINCHOT AWARD.” My submission follows and I would deeply appreciate an acknowledgement of receipt of this email and that I provided sufficient information that my submission will be included with any other submissions regarding this very special man who has dedicated himself to the rise in Prostate Cancer support from the Australian government: In Harry Pinchot's honor, I, along with the many Prostate Cancer patients, survivors, and advocates in Australia, join them requesting PCRI recognize unsung heroes like Jim Marshall, who are out there making a difference in other people’s lives. =========================================================================================== I have exchanged many emails with Jim Marshall as well as other Prostate Cancer patients/survivors/advocates in both Australia as well as New Zealand. Jim has been a HUGE part of the ground-roots impetus to the growth of Prostate Cancer awareness in both those countries engaging himself in seeking support to many levels of government to herald the importance of support for Prostate Cancer awareness as well as appropriate financial support as part of the health care funding provided by those countries. As a recipient of the 2012 PCRI "HARRY PINCHOT AWARD," I STRONGLY support the submissions by people from Australia encouraging considering Jim Marshall as a recipient for the 2017 PCRI "HARRY PINCHOT AWARD," and could not express that support any better than that submitted by Neville Black below. Neville has provided a very comprehensive explanation of the efforts of Jim Marshall to make Australia a country that is growing almost daily in supporting not only awareness of Prostate Cancer, but providing the top availability of education and training to physicians regarding Prostate Cancer so that they have become specialists to provide the latest forms of imaging, treatment, and medications enhancing extremely improved results to patient treatment. I STRONGLY request your consideration to recognize this OUTSTANDING individual who, it is obvious, has dedicated himself to saving the lives of men in his country by the many efforts/action outlined by Neville Black. Charles (Chuck) Maack Recipient of the 2012 PCRI “HARRY PINCHOT AWARD” Email: maack1@cox.net Phone: 316-993-6997 Website: www.theprostateadvocate.com THE FOLLOWING WAS THE NOMINATION BY NEV BLACK: The parallels between the stories of Jim Marshall and Harry Pinchot are remarkable. Education focus Like Harry, Jim has had a lifetime passionate belief in the importance of education, which, after a lifetime in teaching and education, he then applied to helping men and their partners understand their disease, understand their treatments, and learn from the prostate cancer journeys of others. Local support group start Like Harry, Jim's story started with a local prostate cancer support group, and his expertise developed from extensive reading of the literature, honed by discussion with many medical professionals, and conversations with an enormous number of men and their partners. Despite Jim often beginning with "I am not a doctor ..." thousands have recognised that he clearly knows what he is talking about, and can be trusted. Jim has continued to be committed to local support groups, visiting numerous groups all around the country as guest speaker. Compassionate help on the phone Like Harry, Jim recognised early on the power of a conversation on the phone to help a man or his partner gain some feeling of control of the journey they are on. Very few realise how many men with prostate cancer contact Jim each week. Several conversations per week last for an hour or more. Many wives, partners, daughters or sons also make contact, some just for a chat which can give reassurance to the whole family involved. An unfortunate side of being a Convenor of an advanced group is the number of seriously ill men the group has at any one time. Several members succumb to the disease each year. It takes a special person to talk with patients and family members at this time of loss. Jim has been that person. Many families have said a special thank you to Jim for his compassion. National organisation Like Harry, Jim saw the power of a national organisation to provide a focus for men and their partners with advanced prostate cancer, and in 2011 his small informal group was transformed into the Australian Advanced Prostate Cancer Support Group, and affiliated with the Prostate Cancer Foundation of Australia (PCFA). In August 2011 a nationwide linkup was held - a world first - and has been held every month since then (72 so far), for men and their partners to hear expert speakers, to ask questions, and to discuss their journeys. This began as a nationwide exercise, but when Jim's mentor Chuck Maack became the first to join from the USA it became international. Using technology Like Harry, Jim recognised the utility of technology in bringing information to men and their partners, and created an online website and forums in 2011. In 2012 Jim began producing DVDs and started a Twitter feed and a YouTube channel. The website has had more than 500,000 non-member views; the forums have had more than 2690 posts; On Twitter, Jim has posted 1396 tweets; and during the past year, an average of 70 people each day have viewed one of Jim's YouTube videos. Advocacy Like Harry, Jim has taken advocacy for men with advanced prostate cancer to the nation. Just this year, for instance, Jim has twice been invited to address Members of Parliament in the nation's Parliament House, has travelled thousands of kilometres to address meetings in marginal electorates, and done press, radio and television interviews to press for funding for prostate cancer drugs and support services in conjunction with, and supported by, the PCFA. An extra international dimension In Australia, Jim is very well known as an advocate for men with advanced prostate cancer and the people who care for them. But, around the world, as JimJimJimJim, he has an even bigger following. On YouTube, 51% of his viewers are from the USA (UK 10%, Canada 5%, India 3%). Jim is seen and heard for more than 5 hours every day by people outside Australia who seek to understand their journey. The JimJimJimJim website and Forums show similar international viewing figures. (Google JimJimJimJim, or YouTube JimJimJimJim.) Esteem The esteem in which Jim is held in the prostate cancer community is exemplified by: 2014 World Cancer Congress: Jim was selected to join a panel on the main stage, and to make a separate presentation in a side venue (on peer-to-peer support, and appropriate technology, respectively). 2015 Senate Inquiry into the availability of new, innovative and specialist cancer drugs: Jim was called to testify before the Senate inquiry. PCRI Annual Conference: Mark Moyad brought Jim on to the main stage and presented him, Oprah Winfrey style, with Foster's lager, a boomerang, and other presents to ease his "homesickness". 2016 PCRI Annual Conference: Mark Moyad brought Jim on to the main stage to present him with a "Mark Moyad Challenge Winner 2016" T-shirt. 2017 In the Senate Annexe, in front of assembled Members of Parliament, Senators, and members of the prostate cancer community, Jim was presented with the PCFA Max Gardner Award, which read "Jim Marshall: In recognition of distinguished service and outstanding contribution in the Australian community." The Prostate Cancer Foundation of Australia (PCFA) has chosen Jim to lead a PCFA delegation to the 2017 PCRI Annual Conference. Jim has made an amazing contribution to men with advanced prostate cancer, and those who care for them, both in Australia and around the world. We call for his amazing contribution to be recognised by a 2017 Harry Pinchot Award. Neville Black Secretary Australian Advanced Prostate Cancer Support Group
  13. PCRI Annual Harry Pinchot Award

    What you read above was my following the lead of Nev Black surferscentury@hotmail.com of Australia whom also submitted an excellent nomination to PCRI for the 2017 Harry Pinchot Award. With another man receiving that award this year, we should now strive to round up all of the men in Australia and New Zealand to be sure to submit their nominations of Jim come nomination time in 2018. My suggestion is that you all contact Nev to provide him your email addresses so that he can contact you at the 2018 submission time to all get your ducks in a row and flood PCRI with the nomination of Jim. PLEASE KEEP THIS IN MIND and provide Nev your email address NOW so he has it to encourage every man in Australia with Prostate Cancer or having had prostate cancer to join us in this important recognition of a deserving Jim Marshall.
  14. PCRI Annual Harry Pinchot Award

    Hey Chuck, This is a great thing you're doing. Can you post a link where we can vote for Jim? When I was first diagnosed 18 months ago, one of the first things I did was join this site and I got a call from Jim. He shared his experience with me and helped me calm down from the initial shock.
  15. PCRI Annual Harry Pinchot Award

    I personally had recommended Jim Marshall, and I would hope that those of you receiving this email keep in mind come 2018 to join together and send several, individual, recommendations to PCRI nominating Jim for the Harry Pinchot Award since Jim is certainly deserving of this recognition for all he has done for Prostate Cancer Advocacy, Awareness, government awareness, medication coverage, and improved treatment for men diagnosed with this insidious disease in Australia. Harry Pinchot was the Prostate Cancer Patient for whom the Prostate Cancer Research Institute “PCRI Annual Harry Pinchot Award” came to be. Harry, with advanced Prostate Cancer at diagnosis, fought his cancer for thirteen years before succumbing to this insidious men’s disease. In the meantime, Harry, rather than accept the conclusions of various physicians who anticipated he had only months to possibly a year or two left to live, involved himself in deep research and study of Prostate Cancer to determine for himself what should be his most appropriate treatment. At the same time, he became PCRI’s Program Director for over a decade, and was known as “Helpline Harry” because he was always taking calls from concerned prostate cancer patients. His devotion to the mission of educating men and highlighting the plight of those affected by the disease earned him national recognition. Please open the attachment to hear Harry’s poignant reflection on his journey with Prostate Cancer. https://youtu.be/aiPtV2JGKxQ During this period of Harry’s journey and involvement to help others, I, too, was similarly involved, but personally with the development of my website www.theprostateadvocate.com as an advocate regarding Prostate Cancer and as a Mentor working online voluntarily with patients and their caregivers throughout the world. Being honored in 2012 as a recipient of the “PCRI Annual Harry Pinchot Award” was very humbling and I could not help but feel at that time that Harry would have been proud that I had been following his similar path. This year, 2017, Steve Hentzen of Kansas City, a co-founder of Prostate Network https://www.prostatenetwork.org/, was honored with this prestigious award. The notation that comes with the award recognizes “accomplishments and personal attributes that show excellence in prostate cancer education, research, advocacy, and community support.” Prostate Cancer Networking Group www.prostatenetwork.org We invite all prostate cancer survivors, their partners and those helping in the fight to join us. The Prostate Advocate www.theprostateadvocate.com The Prostate Advocate website is dedicated to providing useful resources towards understanding prostate cancer, its treatment, and the treatment of the side effects ... Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Reduced Activity as Mentor (Because of age related health issues, had to limit what had been worldwide daily mentoring) (A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed) Always as close as the other end of your computer to help address any prostate cancer concerns. "What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." “A good character is the best tombstone. Those who loved you will remember. Carve your name on hearts, not on marble.” “Sepius Exertus, Semper Paratus, Semper Fortis, Semper Fidelis, Fraters Infinitas” “Often tested, Always Prepared, Always Courageous, Always Faithful, Brothers Forever" Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network 1st “Edward C. Kaps Hope Award” Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award” Recipient 2016 Us TOO Intl., Inc. Certificate for 20 Years Dedication/Inspiration Email: maack1@cox.net My website http://www.theprostateadvocate.com In my Lord I put my trust…
  16. Earlier
  17. There are factors that resist enzalutamide effectiveness

    Hi Chuck, I had to read that twice because you say Psa later rose again to 0.9, after being below 1.0, so I guess it was considerably below 1.0. I get next Psa result next week, and will see radiation doc on 16th, and onco doc on 21st, and present the request for 5A4 Avodart dutasteride. My GP knew about this stuff, and said it may be good idea, so, we'll see. But tomorrow, I am cycling 45km from here to a winery with a restaurant with maybe 20 others, having morning coffee and maybe a muffin, then returning 45km same way. Probably take me nearly 4 hours, but I see no reason to quit the cycling until cancer or treatment side effects push me off the bike. I never pray on a Sunday, but celebrate Nature by just being within its Wonderment with little need for words. But this arvo, Saturday, there's a concert by 30 musicians playing classical music ( violins and cellos, flutes ) at a local Anglican Church with beautiful acoustics and it is there I witness the magnificence of humble achievements of others. It is a highly contemplative time that brings peace of mind away from the distracting violent and silly world that is over-reported to us daily. I went to their June concert which featured Baroque period music, I was recovering from double TKR, and somehow the moving experience reset my mind. I missed the August concert, but I need to re-set again. Its not the words that count, its the music, and just being with quiet gathered group........ I think you are right to keep researching yourself, difficult today, in a world which mostly refuses to focus for longer than a Tweet, and which is obsessed with emotions and avoids nitty-gritty details. To all, I say keep as well as you might, and I know it is difficult, Patrick Turner.
  18. There are factors that resist enzalutamide effectiveness

    Oops.....I meant "PATRICK" for my reply! I am working with so many patients that I occasionally (thankfully) make such slip-ups in names. Sorry, Patrick!
  19. There are factors that resist enzalutamide effectiveness

    While on Zytiga/abiraterone acetate I continued Lupron/leuprolide and Avodart/dutasteride. With Zytiga/abiraterone acetate developed to block testosterone production from the three sources (testicular, adrenal glands, and that androgen/testosterone that cancer cells can produce themselves) - wherein LHRH agonists or antagonists only block testicular production - I was able to manage control my very slow PSA rise for several years all below 1.0ng/ml. Having also read that Metformin can have a synergetic effect on Zytiga to enhance its effectiveness, I gave that a try that worked for awhile, but eventually my PSA elevated to where I discontinued the Metformin since that synergetic effect obviously was no longer effective. By the time my PSA that had been below 1.0ng/ml for several years with a good drop but then eventual very slow rise up to the 0.9ng/ml range my MedOnc and I decided to stop just the Zytiga and turn to a try with Xtandi/enzalutamide that served a different purpose of, as you note, a supposed super anti-androgen much more powerful than Casodex/bicalutamide to block the multitude of androgen receptors on cancer cells from androgen/testosterone access. With continuing the Lupron/leuprolide and Avodart/dutasteride and now changing to Xtandi/enzalutamide, there was only very brief effect of lowering my PSA slightly before the PSA again began to rise. That is when my research found the paper I provided in my earlier post that Xtandi/enzalutamide may be more effective with the effect Metformin may have on issues causing blocking of the Xtandi effect. Thus, by again giving Metformin a try, but this time with Xtandi, I should know more next week with a PSA test scheduled to see if such an improving effect has occurred. Monitoring various Prostate Cancer research sites and reading, reading, reading can sometimes find solutions otherwise not brought to our attention. So we do so, pray, and continue researching. What I learn that makes sense, I pass on to as many other prostate cancer patients/caregivers for which I have email addresses for their further research and discussion with their treating physician. Wishing you well, Paul!
  20. There are factors that resist enzalutamide effectiveness

    A very good post Chuck, many thanks. I'm on Zytiga and don't know how long for, and maybe might have Xtandi later, but someone said Xtandi was like Cosudex, bicalutamide, but stronger. In early 2016, after 6 years on normal ADT with Lucrin injects, it began to fail. By July I had additional IMRT to PG and started Cosudex, but that only worked for 6 months. I may never have Cosudex again but I wonder if metformin or anything else would improve blocking action of Cosudex. I have next Psa next Monday, and apparently cannot see my onco doc because he's ill, and have to talk to intern in about 10 days, and most are just not on the ball. Your post says you have been fighting Pca since 1992 ! Wow, that's 25 years. Amazing. All the best, Patrick Turner.
  21. Interesting information for those prescribed enzalutamide (Xtandi) as part of their androgen deprivation (ADT) regimen and appearing to show little effectiveness. There are factors that resist enzalutamide effectiveness but with the addition of Metformin that resistance can be reversed and sensitivity of enzalutamide activity restored. http://tinyurl.com/y8u7dbkm By using C4-2, CWR22Rv1 and LNCaP cell lines, as well as mice bearing CWR22Rv1 xenografts treated with either enzalutamide or metformin alone or in combination, we demonstrated that metformin is capable of reversing enzalutamide resistance and restores sensitivity of CWR22Rv1 xenografts to enzalutamide. We showed that metformin alleviated resistance to enzalutamide by inhibiting EMT. Furthermore, based on the effect of metformin on the activation of STAT3 and expression of TGF-beta 1, we propose that metformin exerts its effects by targeting the TGF-beta 1/STAT3 axis." According to the news editors, the research concluded: "These findings suggest that combination of metformin with enzalutamide could be a more efficacious therapeutic strategy for the treatment of castration-resistant prostate cancer." DISCLAIMER: Please recognize that I am not a Medical Doctor. Rather, as a medical detective, I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. I have dedicated my retirement years to continued research and study in order to serve as an advocate for prostate cancer awareness, and, from an activist patient’s viewpoint, to voluntarily help patients, caregivers, and others interested develop an understanding of prostate cancer, its treatment options, and the treatment of the side effects that often accompany treatment. There is absolutely no charge for my mentoring – I provide this free service as one who has been there and hoping to make your journey one with better understanding and knowledge than was available to me when I was diagnosed so many years ago. IMPORTANTLY, readers of this paper must understand that the comments or recommendations I make are not intended to be the procedure to blindly follow; rather, they are to be reviewed as my opinion, then used for further personal research, study, and subsequent discussion with the medical professional/physician providing your prostate cancer care. Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Reduced Activity as Mentor (Because of age related health issues, had to limit what had been worldwide daily mentoring) (A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed) Always as close as the other end of your computer to help address any prostate cancer concerns. "What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." “A good character is the best tombstone. Those who loved you will remember. Carve your name on hearts, not on marble.” “Sepius Exertus, Semper Paratus, Semper Fortis, Semper Fidelis, Fraters Infinitas” “Often tested, Always Prepared, Always Courageous, Always Faithful, Brothers Forever" Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network 1st “Edward C. Kaps Hope Award” Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award” Recipient 2016 Us TOO Intl., Inc. Certificate for 20 Years Dedication/Inspiration Email: maack1@cox.net My website http://www.theprostateadvocate.com
  22. Recovery from chemo

    Thanks Chalkie - I guess we will have to wait and see whether the coming weeks bring some relief. He didn't have the level of pain before the chemo so it is strange that it has caused so much discomfort. I hope you have some good results with the Xtandi - take care
  23. Recovery from chemo

    Hi there I am 71 and had 7 infusions of docetaxel earlier this year finishing at the end of July. My PSA was around 45 when it started and it plateaued at about 20. I to have mets in my spine although I am not suffering any pain. Getting off chemo was a relief and I am feeling fine. My PSA was up to about 50 5 weeks ago and since then I have started on Xtandi - which I am tolerating quite well. I continue to take Zoladex which I have been on for the past 5 or so years. Radium was not offered to me - but it may be more relevant for your man for pain relief. I have no experience with Targin. My onc has talked about having a crack at the met at C6/7 and I have had scans and a MRI to check it out - it has been there for a number of years and is a few mm form my spinal cord - Maybe he will have a look at it in next year. But has ask me to be vigilant to any pain or loss of function due to this met. Chalkie
  24. Recovery from chemo

    My husband is nearly 4 weeks post 6 treatments of Doxetaxel. I have written a bit about his case in "my story" his psa was down to 13 3 days after his last chemo and his onc was happy enough with that - it was originally 100 earlier this year. He had a six monthly injection of Lucrin which is due to expire soon and his onc wants him to have a 3 monthly injection of Zolodex going forward as he feels it is more effective. What concerns me is how he is feeling at the moment. He has some mets and one in his lower spine and pelvis and is very uncomfortable at present so still taking Targin mainly in the evening when it all catches up with him. I would be interested to here how recovery from chemo has gone for those who've had treatment. The oncologist said that if pain not gone 8 weeks post chemo, he wants to look at doing some more radium. Thanks
  25. Time to PSA nadir prognostic in metastatic CRPC

    CT scans at 6 months intervals indicate significant resolution of cancer in soft tissues. Latest bone scan suggests less prominent activity in skeleton and no new sites in skeleton.
  26. Time to PSA nadir prognostic in metastatic CRPC

    Rosco A spectacular fall in PSA. While time to nadir of less than 6 months is a negative, the nadir of less than 0.2 is a positive. Hopefully the second trumps the first! Jim
  27. Time to PSA nadir prognostic in metastatic CRPC

    Mine went 9000, 0.76, 0.11,0.450.66, 1.00, over 12 months with ADT only. nadir is 0.11 took 5 months.
  28. Why the moustache?

    I already have a mo. I went to movember.com site but it seemed like all ra-ra-ra and didn't explain first up how money could be raised. It kinda looked like yet another doubtful entity, unless proven otherwise, and I cannot see how anyone would want to pay some dough for the 300km a week I am cycling. Most ppl wince in pain when I say I ride that far. I try to give my kilometres away, and they refuse. My dear oncologist tries to be a po-faced serious operator who got more upset by my last PsMa scan "this is a horrible scan he said" and yeah sure, and tried to calm him down and said "well from what I've read, its about normal progress in many cases, to be expected and I am lucky to know you doc...". I then offered to cycle some km for him because I said "you don't look fit as you should" and he smiled, "BUT," I said, "there are side effects with this therapy; you may find your heart racing and get all hot, but do not fear, its not a heart attack, its not a real bad hot flush, its me, riding up a nice steep hill, just for you, and for free," and then he started to chuckle. Ah, the bastard wasn't made of ice! These oncologist fellows have a terrible job presiding over ppl who mostly die from the cancer or the side effects or both, and the oncology career isn't one where most ppl are healed up and go away happy as larks. Often they ain't the cocky surgeon type who prance about with scalpel to perform miracles every day. I also tried to train my own magpie to fend off other magpies who attack me at this time of year. All went well after a month's training and he'd sit on my back pocket of my jersey, then swoop out to warn off a testosterone saturated attacker with "Fark Arf, Hees Ah Kaaaa" - its hard to translate Magpi-ese language, and it did the trick OK. But a 2 weeks ago, there was a female maggi sittin inna gum tree with that look in her eyes "I just need ya to fix me up" and that was the last I ever saw of my trained bird. I jus sucks it up now, and I've sometimes had 8 attacks in a ride of a few hours. Patrick Turner.
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