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  2. Charles (Chuck) Maack

    Tony Max - My prostate cancer journey

    I will be posting the results of my targeted radiation far and wide once the radiation is completed and can determine subsequent PSA level. I would expect that if successful, and if cancer is not located anywhere else not having been identified in my specialized radiotracer/isotope imaging, my PSA should show up in ultrasensitive reading below 0.01ng/ml. I pray that will be so!
  3. Charles (Chuck) Maack

    Merv ALLAN. My Story.

    Merv, you definitely need to see a Medical Oncologist to perform diagnostics, imaging, and determining you best course of action based on your status from these tests. I tried to find such a Medical Oncologist near you but with no success. Closest I found was in South Brisbane at the Mater Medical Centre, 293 Vulture St., with haematologist Kerry Taylor. See more about him here: http://www.blood2018.com/program/speakers/kerry-taylor.html so this would mean a trip to him after calling and arranging an appointment while at the same time advising that in view of this having to require travel from your location to South Brisbane you would want appropriate testing and imaging while at that appointment with anticipated treatment options discussed and begun. And ask if this could be arranged and the amount of time/days you may have to remain close by the Mater Medical Centre to accomplish what you perceive are necessary requirements based on the years you have been living with high prostate cancer PSA levels and inadequate physician expertise or care. Not sure if that can be arranged for you, or if others monitoring this forum know of Medical Oncologists closer to Bundaberg than Brisbane. For certain do not continue with the physicians you have been seeing since it is absolutely obvious they have no experience regarding understanding and treating prostate cancer. You need expert help and you need it in near time. If any reading this post live in Brisbane and could provide a place for Merv to stay should he come to Brisbane for an appointment and treatment, please post here your willingness to do so.
  4. Today
  5. tonymax

    Tony Max - My prostate cancer journey

    Chuck, Good to hear from you and thanks for all that info. My ADT journey is now at the 15 year mark (Gleason 8) after failed radical in 2003 - age now 72. Continuing Lupron and just over 4 years on Enza now. Enza on a clinical trial - the only way I can access it affordably in Australia. I cannot change my treatment regime and stay on the trial so am constrained in that sense. My PSA continues just under or just over 1.0 Was put on (and remain on) Metformin for type 2 diabetes before starting Enza. Am getting more benefit from Enza than most of the guys on the trial. Some recent comments that Metformin may help to reactivate Enza - not sure about that. My MO mentioned last visit that he has another patient still going strong on Enza after 8 years. Will check to see if he is also on Metformin. My pathology is very good although Vit B12 is a bit low - presume due to Metformin from your comments. Only lesion in my pelvic lymph node - rest of body clean (CT and bone scans) after 15 years. These scans pretty primitive but still hard to get more sophisticated ones in Aust. I am amazed that the cancer may not have spread from the one location in 15 years! My plan is when Enza starts to fail I consider perhaps some Abiraterone or some form of radiation to the lymph node. In the meantime will stick with the Enza and clinical trial. Good luck with your radiation treatment and please keep me posted on your progress. Very happy to follow in your footsteps on this one. Regards Tony
  6. Hi Darby I hope your doing much better. I felt I had to say something. I started on Lucrin a year ago today. My adverse reaction has been minimal. No hot flushes except maybe a little in bed sometimes. Psa has continued to drop 3.6 last time. However I took up the Manplan soon after and continue to do it at home. It has been very beneficial and I'm sure its played a big part in my success so far. Very little weight gain, largely muscle. One thing that we have done for the last 6 and a half years, since my wife's brain tumor discovery, is make a juice of beetroot, carrot, celery, ginger and apples every second morning. I'm sure that has been of great benefit with other changes in our life style. Inspite of my restricted bladder capacity etc my kidneys are first rate, constipation is not really too much of an issue and BP is 120/60. So following an exercise program has been positive for me. Cheers
  7. Sisira

    Merv ALLAN. My Story.

    Dear Marv, I am really sorry about your plight and a couple of others who have had similar experience. You have now become a well informed patient but it may be too late. To hell with those STUPID doctors who have played with your life! Hope you will find a way to fight with this insidious disease and protect your life. Good luck! Sisira
  8. seafriend40

    Merv ALLAN. My Story.

    Thanx to all who replied, much appreciated. Forgot to mention (seniors moment) I am 78 years old,married and retired, have the tired part, still looking for "re"!! Had a long phone discussion with Jim and that is how I am here. Looking forward to many more "talks" with you all!!
  9. Kezza2

    Merv ALLAN. My Story.

    Merv ..... mate, Don't be afraid to sack your medicos if you don't have absolute faith in them. I sacked my first Urologist for just that reason. I now have a great urologist, two fantastic medical oncologists (on in the public system and one in the private system) and a great radiation oncologist I can call on as needed. Its YOUR life they are messing with. I was horrified to read your history, especially when compared to mine. You don't mention if you have had regular bone scans and/or CT scans to monitor your condition, and I am guessing you haven't had chemo yet either. You might find Lucrin easier to tolerate than Androcur also, and for me it was more effective too. My advice would be to shop around and look for a urologist. or preferably a medical oncologist, that specialises in prostate cancer. To quote my urologist, "if you have a problem with your water works, come and see me, but for cancer see your medical oncologist" Good luck, and keep us informed of developments
  10. Chalkie

    Merv ALLAN. My Story.

    Merv you are a legend. Who know what is going on - I have had lots of treatments since surgery "failed to cure" in 2005 but I am dry. Then I was told I had had two to five years!! Now after chemo (7 infusions) last year and 8 months on Xtandi and continuing with Zolodex (started 2012) my PSA doubled from 10 to 25 and to 50 recently, the view is that if it is up again in two weeks I will be considered for the TheraP trial - Lu-PSMA617 v Cabazitaxl. Scans show many many mets. Again few symptoms apart from the usual side effects of treatment and at 72 I am a happy boy - and looking forward to ten days in Noosa
  11. alanbarlee

    Merv ALLAN. My Story.

    Hi Merv, Unless your story is incomplete, that is a tale of apparent professional neglect with all your medicos, which I found very disturbing to read. Fortunately it seems like a very isolated case, which while a good thing, doesn't help you much. What I can say is that patient empowerment through self-education via informative and sharing sites like this one (and many others) is the best safeguard to maximise the future likelihood of positive outcomes. You might want to get a short update on the diagnostic scans and treatments that have become available during the period since your first elevated PSA - and which continue to evolve at a rapid rate - by checking out my recent response to Zac under the 'metastatic' page in this Forum. As you will see, there are a number of good options available to you, but you may want to have your detailed history and options reviewed by a medical oncologist that you can respect and trust - labels which, judging from the experience of our members, fortunately apply to the overwhelming majority of them. Perhaps a well-known hospital with a well-recognised oncology department would be a good first port of call. Let's know how you get on. Cheers, Alan
  12. Skipper

    Merv ALLAN. My Story.

    Hi Merv, very sorry to read your treatment history. I am not a Dr, in deed have no medical qualifications what ever but all I can say is "there are good Doctors, not so good Doctors and bad ones and you seem to have copped more than your share of the latter. As a public patient I experienced advise that I was not comfortable with and finally asked for a second opinion. This not being available to me in the public hospital system I paid to see a private specialist. His recommendation for immediate RP probably saved me from loss of my bladder to where the PCa had already spread.Twelve months later and PSA still undetectable at last test, I have no symptoms although with a positive margin remaining I expect a reoccurrence at some point. The system is full of good people and others just "filling in their day, having limited skills and who apparently spend little time trying to get up to speed in this area where there are many different opinions and the knowledge base is forever changing." My own GP told me at the outset that he would never let them touch him with a knife for PCa yet today, 7 years later I believe I owe my current health to just such a procedure. Keep doing your own research and also, when you find a good Doctor in whom you can trust, hold on to them! All the very best for the future
  13. Patrick Turner

    Merv ALLAN. My Story.

    Hi Merv, In 2009, at age 62, I had Psa slowly creep up to 5, then had biopsy, and the samples were analysed and I had a Gleason 9+9, agressive cells, young man's cancer and lethal. I was booked for RP and when attempted 4 mths later ( due wait time ) Psa was 8.8, and they found too much cancer around PG so they could not cut PG out, so I ADT with injects of eligard, and had EBRT 70Gy after the Eligard shrunk the PG size down to small target for EBRT. Full ADT has continued to now, 8 years,except for 2 pauses where Psa shot up again, so I went back onto ADT, which eventually failed. Since 2009, Psa has yo-yo'd up and down between less than 0.1 and 8, and is about 12 maybe now, after the first 2 chemo doses. The ADT held it down for 6.5 years then 6 mths Cosadex, and 8mths abiraterone. I had extra IMRT to PG, 30Gy in 2016. But now there's no spread to organs, but my bones have countless mets. I have no idea if chemo will work so may need Lu177 and Ra223. The side effect of complete sexual mutilation due to RT and ADT was quite OK because I don't have a partner, and those available don't want sex due to menopause, so no shielas in my life. I found I could cycle faster while chemically castrated than nearly all other blokes my age, so the need for testosterone is a bit of a myth. But bone density suffers, but then if you exercize enough, the BD remains OK, and unfortunately most blokes get fat and unfit and do nothing. I did not. BMI is 24. I cycled 130,000km between 2006, whenI SHOULD have had biopsy - docs woud have found a tumour with lower Gleason, that was operable, and which had not already spread to bones. You and I have a major battle ahead, and its anyone's guess who wins, but I was told that because they could not cut out PG that there "was no cure" and I thought and still think Pca will kill me and I will be in the 30%+ who die from it, because I have so few other "co-morbidities", ie, other conditions that would kill me. Compared to what the docs did here, what yours did from 1990 seems cavaleer, brazen, incompetent, very sub standard. But that's all water under the bridge, can't be changed, and what you choose now decides life and death. I am on chemo, and won't know if its working for another month, after 3 infusions. If my Pca is ignoring the the chemo, and Psa is zooming up, I'll try for Lu177 etc. But even the Lu177 etc may not work forever, a year or two, and then there is nothing, just palliative care, and I'll die, and I hope the pain drugs are good. 3 score years and 10, its all you are supposed to get, anymore is a bonus, and I have alerady outlived my dad and a sister by 11 years, they went via melanoma and Oa, both diagnosed way too late due to silly attitude to life, and stupid doctors. But even though I was waiting for my turn at getting shit to happen, and having yearly Psa tests after age 50, I was not investigated until Psa went to 5.0, way too late for me because I should have been examined in about 2004 when Psa was about 3.0, and some fellows have emailed me to tell me their GP insisted on biopsy at 2.8, and they said the GP saved their life, because Pca was found when Gleason score eas only 5, and PG was removed early enough. NHS in UK recommends examination at Psa at 3.0. I was making a small amount of Psa for a larger tumour size which had become able to spread due its mutations. So I have managed to stay alive with Pca since 2005, 13 years. But I know guys who were diagnosed 3 years ago and all forms of treatment including ADT and chemo soon failed, and Lu177 may not get it, so they have reason to fear it. Best hope is for immunotherapy being developed at Marsden Hospital in UK where some blokes with months to live have got remission from Pca that had many mutated forms, so all else failed. But the fix is only good for 15% of patients so far, its not yet available, and may never be. But if I last 2 years, maybe it comes to Oz in time to get it. I'm going for a bike ride and lunch at cafe now, nice day here in Canberra, wind is blowing BS from Pollies on the Hill away. Keep well, Patrick Turner.
  14. Yesterday
  15. seafriend40

    Merv ALLAN. My Story.

    As a result of a Readers Digest article in 1990, I had a PSA blood test done and the result was 13. I then was sent to a Urologist and then an Oncologist and was advised that "there was nothing there, nothing to worry about, have it checked again in 12 months! Second reading came back at 27, saw Urologist and then Oncologist and had TRUB, was told "pre cancerous condition found, but nothing to worry about, come back in 12 months" . This time reading was 32, and TRUB resulted in 1 cancerous sample found out of 6. Was never told Gleason score or offered any other advice but"will give you Aggressive Radiation Therapy" and a 90% chance of complete cure. Had 17 weeks radiation therapy in Townsville in 1993 and in Feb, 94 PSA was 0!. Every year thereafter had PSA done, in conjunction with complete blood scan, in December. In 2000, PSA came back at 20 and was told by Urologist that I had Advanced Prostate Cancer and that ONLY viable treatment was Hormone Therapy. Was put on Androcur at 200 mg per day! went on Net, didn't like what I found and self medicated myself down to 50 mg per day which kept PSA at acceptable level. In 2012 a friend who also had APC, advised me to stop taking Androcur and showed me "side effects", was HORRIFIED to say the least. Saw a new Urologist who asked why I had continued to take Androcur for 12 years, and I replied because I knew no different and that GP had continued to write prescriptions. This Urologist then advised me to "wait until PSA gets to 60 and would see what might be available. Last December my PSA stood at 73, and a more recent, 3 weeks ago, reading is even higher!. Am now waiting for GP to return to get referral to Oncologist. Meantime keeping EVERYTHING crossed!!! Thanx, Merv. (Seafriend40)
  16. Charles (Chuck) Maack

    Tony Max - My prostate cancer journey

    Enzalutamide/Xtandi has been working very well for you, Tony. I had similar dramatic effect in PSA drop when I started abiraterone/Zytiga some years ago. I have generally managed my PSA level with close attention to levels and have moved from Zytiga to Xtandi then back to Zytiga and currently, since I have a good supply of both, I am taking two 250mg abiraterone "with dinner" daily along with two 40mg enzalutamide every-other day, along with dutasteride/Avodart 0,5mg on capsule every third day (just as effective as taken daily once established in one's system for at least 4 to 6 months), and continued Lupron every six months and Prolia also every six months. I've been on/off Metformin (accompanied by Vitamin B12 since Metformin can deplete this important vitamin) but couldn't really tell if it was playing any role. Since Metformin can also cause problems for some health issues (though good for others) I decided to just stop this medication. My latest PSA was 2.07ng/ml and PSA levels previous were only over that twice and lower than that for many years; yet, if I went off these PSA/cancer cell managing medications my PSA would promptly start elevating. More recently (just a few weeks ago) I learned of and had administered the radiotracer/isotope fluciclovine (Axumin) that when injected travels directly to cancer cell activity and can be viewed with F18 PET/CT imaging. AFTER ALL THESE YEARS ON ADT, this product settled on 1cm of activity near my anastomosis (connection of urethra to bladder neck) when, 26 years ago, I had my prostate gland surgically removed in "Open" surgery. The imaging was from top of my head down to mid thigh, and all was clear of any other presence of activity. So, all this time it was never metastasized to bone. It appears that with my research and study and appropriate prescribing of medications pretty much dictated by me, I have kept this location of cancer cell activity under control for the past 22 years on ADT. Local CT, Body, and MRI imaging has never been sensitive enough to identify this location prior to my learning of this radiotracer recently obtained by the University of Kansas (USA) Medical Center nuclear 177 miles north of my home in Wichita, Kansas. That imaging has now been meshed with another CT scan and MRI, and the MRI determined that the area may be slightly larger than 1cm and the activity slightly pushing at the side of my rectal wall. I began "Targeted" radiation directly to the imaged location with what is known as EDGE radiotherapy just this past Thursday, and will have four more treatments with next Tuesday and Thursday and then the following Tuesday and Thursday. I am ecstatic in the hope that finally my cancer just might be totally eradicated after 26 years since initially diagnosed!
  17. Our group, the Australian Advanced Prostate Cancer Support Group, has always had a close mutual association with the Cancer Council. We recommend our members contact them, particularly for psychological or nursing advice (phone 13 11 20). They are a major source of our referrals. When a man particularly wants to speak to another man with experience, Cancer Council refers them to us (phone number on the bottom of page http://JimJimJimJim.com. ) We have formally recognised this close link, and the Australian Advanced Prostate Cancer Support Group is affiliated with the Cancer Council Victoria. Our Executive Committee member, Tony Maxwell, has been involved in reviewing prostate cancer research for the Cancer Council, and helped to compile the "Research Highlights Report 2017-18". That report has been published here: https://www.cancercouncil.com.au/research/our-research/research-highlights-report-2017-18/ Our congratulations to Tony for his contribution to this most useful research report. Well done! A short history of Tony's prostate cancer history can be found on page 23 of the report. More details of Tony's prostate cancer history, and his great contribution to our organisation, can be found on our site by searching for his Display Name: tonymax http://forums.jimjimjimjim.com/search/?q=tonymax Jim
  18. Last week
  19. Bruce

    INCONTINENCE...

    Thanks for the feedback Noel, I'm going to follow this up. Bruce
  20. prestonn

    INCONTINENCE...

    Bruce and others re "sling" Yes - it is the radiotherapy which does the long term damage. My sling operation was January 2012 and I am still benefiting from it - before that my incontinence had reached the point where I was out of control especially when active. It involved the insertion of an artificial barrier between the scrotum and anus which gave back control. The recovery took 6 weeks plus and there was plenty of bloody wees and one memorable blockage but worth it in the end. I am not sure whether the technology has changed or developed since then. Obviously it involves discussion with a urologist. Noel
  21. DesG

    INCONTINENCE...

    For future reference ModiBodi are developing a range of reusable incontinence underwear for men, they are looking at early next year for availability. They have a range of products for women presently.
  22. Hi Zac, The delay is so that I can access the treatment via a clinical trial rather than pay $9,600/shot personally. I'm not sure of the criteria, but my specialist said he believes I can get on a trial coming up late this year/early next year. He also said that as I'm responding well to Enzalutamide, there is no rush. I tried to get onto a PhaseI a few months ago and I was deemed ineligible as I had low PSA and it needed to be above 20. Mine has never been above 20. Cheers Paul.
  23. Zak

    What is secondary hormone therapy?

    Definitely! Thank you for the update Alan
  24. Hi Paul thanks for posting this question. I think targeted treatment is the way to go too. you mentioned you hope to start Lutetium-177 later this year. I was wondering (1) why the delay, and (2) if you what the entitlement criteria is ( I have read lots of men would like to be on it but don't have access). thanks.
  25. prestonn

    INCONTINENCE...

    Wayno there are schemes which supply at public expense for pads. Not sure what part of Australia you are in but in Qld this is certainly the case. Certain agencies like Blue Care in Qld have incontinence services which will point the way. In my experience, the greatest find was a urologist who would insert a "sling" which brought everything under control. That urologist in Brisbane was Dr Greg Malone. One caution - my guess is you are in early days to judge how well things will settle down after some further weeks. Hope this helps. Noel
  26. Thanks Alan, for that extra piece of news. When I asked my MO about Genetic Testing, she wasn't much help. Cheers Paul.
  27. Hi All, Canook mentioned the recent genomic work going on at Peter Mac in Melbourne. I want to add that the Garvan Institute in Sydney has for some time been doing ground-breaking work in this domain that is focused on prostate cancer. Professor Vanessa Hayes leads a team that published some great work in April 2014, in which the complete genome of a prostate cancer tumour sample was mapped for the first time. Her team is also studying germline genomes of indigenous southern Africans compared with similar ethnic groups in the USA, where prevalance of PCa is double that of caucasians and latinos. Garvan has an informative website, which is well worth tuning into. Cheers, Alan
  28. Mishka@wn.com.au

    INCONTINENCE...

    I'm in WA, this is Silver Chain's Web site: https://www.silverchain.org.au/wa/
  29. Nev Black

    INCONTINENCE...

    G'day Wayno CAPS is a federal government scheme to assist with incontinence costs which you may be eligible for. Annual payment, not means tested, I believe. Ask your Urologists nurse about it. The link below will give you an idea. I don't know if your state government has any schemes to help. https://www.humanservices.gov.au/individuals/services/medicare/continence-aids-payment-scheme If the problem continues to be an issue the next link may be of interest to you. I have had an Advanced Male Sling for seven years. I have found it a fantastic success. http://www.menshealthmelbourne.com.au/advance-male-sling-system/ Good luck You have my phone number. Happy to talk to you anytime.
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