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  1. Yesterday
  2. Patrick Turner

    Is this the end ??

    Well, that's a different thing to having big spheres in brain up to 44mm dia. My bone mets are so far spherical, and up to about 10mm dia, and apparently not a threat to bone strength. Just where your mets are depends how easy it would be to give them IMRT and then you need the mets to respond to the IMRT by dying promptly, leaving your healthy tissues more or less un-harmed but of just what might happen is not at all within my knowledge but what happens if dura ends up with holes in it after treatment ? By all means chase the other treatments that may be possible. There are some who say there's no such thing as fighting cancer, but you and I both have to consult doctors, get scans and pay, pay, pay, and we all would just prefer to un-age, and enjoy out last years. So, it may not be the end. When I was diagnosed in 2009, Gleason 9 with 9 positive biopsy samples, I always thought I might un-live within two years, or maybe 20 years, nobody knew how I would react to treatments. Then the doc opened me up, took a look around, took more biopsy samples, but could not remove PG. So then I thought I probably was doomed. Last week, Psa was 4.5, trend is for Psa to nose dive now, but I for one know how fast it can spring back up. Lu177 is maybe next Thursday, but on Friday I got email from Genesis Care who administer Dr Lenzo's team and they wanted me to contact them asap, but it was too late and I can't talk to them until Tuesday and maybe they change the date, if they could not get the Lu177 prepared at Lucas Heights reactor because Easter break interfered, but maybe some other bother has cropped up. A week's delay would be fine, and not make the outcome any worse. Always look on the bright side. Someone said they love Easter Bunnies, and dared to mention the Playboy variety, but from what little I do know these creatures are not always angelic, and they can be far more expensive than any cancer treatment. I am quite happy with a Lindt 70% cocoa dark chocolate, and all this Easter - Christmas -Valentine-Mothers-Day emphasis on buying stuff as presents which ppl have not asked you to buy is all something I have no need to care about. But have a nice day tomorrow, and years' full of nice days after. Patrick Turner.
  3. Nev Black

    Is this the end ??

    Good afternoon Kerry Around this time last year David Abrahams and myself were in Melbourne at the PCFA's Community Conversations at the Peter Mac Hospital. We were fortunate enough to get a partial tour of their research centre where they were actually starting research on small cell carcinoma. I am sorry I cannot shed any light on the progress of the research over the last 12 months and unfortunately progress can be very slow. I don't believe they would have reached a clinical trial stage to date, but it may be worth checking. Great to hear you are going forward with a positive attitude. Nev
  4. alanbarlee

    Is this the end ??

    Kezza - there's been some good and recent discussion on small cell / neuroendocrine cancers on the Forum. Check out the 'Paul Hodson' (WA member) 2/11/18 post. Aggressive treatment of NETs is usually recommended, possibly including a cocktail of immunotherapy drugs and maybe platin-based chemotherapy. 177Lutetium-PSMA617 may also be relevant, but NETs may not be PSMA-avid - another question to ask your radonc. You might also ask what are the biopsy possibilities, and whether circulating tumour cell testing would add anything, to get a good handle on the NET theory. Stay in touch. Alan
  5. Kezza2

    Is this the end ??

    Thanks for that Alan, I love a bit of humour. What do you know about "small cell" ?? My rad onc suspects it may have mutated to small cell, given its unusual position in the dura, the first membane between the skull and brain. If she is right that might open up a new drug approach, as you mentioned previously.
  6. Last week
  7. alanbarlee

    Is this the end ??

    Seems like you're in really good hands, Kezza. 'Shallow' radiation and immunotherapy both sound like really good options. There's such rapid progress happening with breakthrough treatment. Docetaxel - the first effective chemotherapy for prostate cancer - only hit the scene in 2004, and now look at all the new drugs, radiation techniques, imaging methods and genetic tests that our docs have available to them to precisely hit the various subsets of our disease. If you had to cop PCa, you certainly chose a good decade. With a bit of luck you'll buy the time you need to at least push the disease down into remission. The doughnut may not come with icing, but it's much more sustaining than the hole! Best wishes, Alan
  8. Kezza2

    Is this the end ??

    Thanks Patrick for the post. The latest prognosis is that the tumors (5 total) are only in the dura, the lining of the brain just under the skull. the big one is 44 mmm across but only fairly thin, but the growth is pushing on the brain causing the swelling that gives me the symptoms, eg difficulty typing, talking sometimes, etc, and numbness on the left side of my face. I start radiation on 7th May - 10 doses, and my med onc is chasing up the availability of some new immunotherapy drugs that do cross the brain-blood barrier (thanks Alan). After treatment, they still want me to continue with the Thera-P trial, so I might get the Lu177 yet. It hasn't got me yet - keep on fighting ☺️
  9. Patrick Turner

    Is this the end ??

    I was at follow-up meeting with my local radiation doc and he is leaving Canberra Public to work at Albert in Vic, and so it was shake hand event as I have known him since 2010. Anyway, I mentioned I kept in involved with this group and the HealthUnlocked group to share experiences with many other men and I mentioned to this doc here that one man in a group had a brain met nearly as big as a golf ball, 44mm, and this doc suggested stereotactic RT. But 44mm is a frightening size, are you sure that was the size and not 4.4mm ? I would imagine having enough IMRT to a 44mm sized tumour will affect your personality and general level of coping physically. In other words, there would be side effects that may be permanent. I've had 70Grey to PG for initial treatment then another added 31Grey 6 years later which had only mild effect if any, because I was put on Cosadex at beginning of the IMRT and Psa went from 5.6 to nadir of 0.4 then up again in 6 months, so I can't say the IMRT worked because if it did, maybe its effect was masked by Cosadex. The 2nd PsMa scan I had in 2017 showed plenty Pca in PG, but that's reduced with Lu177. I do not know if Lu177 is able to go to brain or not. Doctors are eager to keep you alive, but always expect that there may be complications so you'd ideally want to have someone caring about you at this time. We like to be independent for as long as possible, but none of us can be that forever. I don't have any partner or kids, and have gotten used to just sucking up all the bothers in life when they happened without any support from anyone, so when I am forced to admit defeat and surrender, I'll just hold one hand with the other, and hope the public care system gives me enough pain relief. I don't fear being alone, because I've been alone most of my life, and am used to it. I know I am not going to have a huge long future where I don't have to worry about anything like we did at 30, or even 50. Its beautiful day here, 26C predicted, and I'll get out for a short cycle ride, and have a swim later, lunch at a café, then tinker in shed, and I don't need companions for any of this, I'll be quite serene and peaceful. Companions would be nice, but the ones of the past left town after some years wheras I stayed put, quite happy to not have to travel anywhere; I seem to cope OK. But we are all different, and some of us feel dreadful during the challenge Pca brings. I've shared house with a number of ppl and none were worry-free, and not all coped well, even without any cancer, but at least a daily or weekly chat was good between the 2 of us, but the reality is that we must cope alone, and afaiac, just accept help when its offered with as positive attitude as possible, so the helpers feel better. I'm darned if I can let myself be a grumpy old man. Patrick Turner.
  10. alanbarlee

    Is this the end ??

    Correction: Please ignore my reference to darolutamide in my earlier post. This novel anti-androgen is claimed to NOT penetrate the blood/brain barrier (making it LESS likely to cause some of the CNS side effects that can be encountered with enzalutamide). Sorry, Alan
  11. DavidAbrahams

    Is this the end ??

    Kezza, Shocked and saddened to read your latest post this evening. There is not much else I can say without repeating what has already been said. You are undoubtedly an inspiration to all members of this very exclusive "MEN ONLY CLUB". Keep up the good fight and endeavor to continue to enjoy the things in life that brings a smile or laugh. Have you heard of PAL Assist sponsored/ supported by CCQ & PCFA. It is a Palliative Care help program for individuals and family members. 1800 772 273 . 7am - 7pm You can off course give me a bell if you want a chat. Good luck and All the Very Best to you and yours. David
  12. Charles (Chuck) Maack

    New Diagnosis - Our story

    In this paper https://tinyurl.com/y4r77bre I address issues regarding “ORCHIECTOMY – A SURGICAL PROCEDURE IN WHICH ONE OR BOTH TESTICLES ARE REMOVED – IS IT SUFFICIENT TO INHIBIT ANDROGEN (TESTOSTERONE) FROM ACCESS TO PROSTATE CANCER CELLS? And you or your Dad may have been the one in Australia to whom I posted this in the past. In any case, it is obvious orchiectomy has not provided the reduction in PSA anticipated. Here are considerations to look into NOW: - Testosterone level - Apparently the antiandrogen Casodex or its generic are not serving to suppress androgen/testosterone from accessing cancer cells - Prescribing the 5Alpha Reductase inhibitor dutasteride/Avodart may serve to suppress any androgen/testosterone from converting to the more powerful stimulant to prostate cancer cell growth and proliferation, dihydrotestosterone/DHT (Your Dad’s adrenal glands are still producing androgen/testosterone) - Your Dad’s dihydrotestosterone/DHT level should be determined and if high, supports the prescribing of dutasteride/Avodart - Your Dad’s PROLACTIN level should be determined (explained in the above url), and if high, Cabergoline should be prescribed and is important as also explained in the url) - Imaging should be performed to determine if metastasis has occurred. If not, then enzalutamide/Xtandi should be considered to replace Casodex or its generic to block androgen/testosterone access to 5Alpha Reductase as well as the multitude of androgen receptors on cancer cells. Another antiandrogens, if available in Australia, is apalutamide/Erleada. These are both expensive medications so you want to make certain your Dad’s health insurance will cover its cost. - If you Dad’s cancer is found to have metastasized, then enzalutamide/Xtandi is still a good initial step, BUT you also then have the option to rather have abiraterone acetate/Zytiga prescribed that is designed to shut down the three manufacturers of testosterone; testicular, adrenal glands, and that which can be produced by cancer cells themselves. In the U.S., one must have known metastasis before Zytiga is approved for prescribing. The other medications above do not require metastasis as a prerequisite to prescribing. Again, abiraterone/Zytiga is an expensive medication so your Dad’s insurance should be checked to make sure would be covered. The foregoing are those steps still available to hopefully reign in and control your Dad’s cancer and preclude moving to chemotherapy wherein docetaxel/Taxotere would likely be the next medication in the journey.
  13. Kezza2

    Is this the end ??

    Thanks Alan (and Patrick) for the great advice. That is the imense value of these forums. I believe the PA hospital Brisbane) has cyberknife and the latest in stereotactic equipment, and the SMO radonc Margo Lehmann is highly regarded in both the public and private sectors, so I am in good hands. My other two medoncs are hovering around like mother hens, so if it is fixable they will fix it. and if not I have had a great life with very few regrets. I will continue to post updates while I am able, and keep fiting the good fight
  14. Patrick Turner

    Is this the end ??

    Great advice Alan. There's stereotactic RT at Epworth in Melbourne who might do "pencil beam" IMRT. But our brain is Our Real Self, and to radiate any part of it could cause profound changes. I just hope Kezza can access ppl who will make his difficult situation less painful or stressful. I wish him all the best, Patrick Turner.
  15. alanbarlee

    Is this the end ??

    A gutsy post, Kezza. One thought which might be worth following up with a good radonc - what about hitting the brain met(s) with stereotactic radiation (e.g. Cyberknife or Linac)? This high dose 'spot welding' is a commonly used treatment for brain mets, although the number of mets maybe limited to 5. At least the large one might be worth nailing. In some circumstances radiation can also help chemo to do its job better (the 'abscopal effect'). On the basis of an unhappy family experience, you might want to carefully check out the option (if it's offered to you) of whole brain radiation before you sign up for it. This has a significant cognitive downside, which is claimed to take 12 months to appear, but which in fact can (and does) kick in much sooner, and causing quite major deficits. Another long shot might be darolutamide, a new and effective prostate cancer drug which penetrates the blood-brain barrier, and which might help. You might be eligible for a clinical trial, or your medonc might be able to negotiate special access from the manufacturer. (I'm not sure whether darolutamide has got past the TGA yet). There are also new immunotherapy possibilities like a pembrolizumab / ipilimumab cocktail, that seem to work best when there's a heavy mutation load - although the side effects of this treatment may not be trivial. If you do go down that track, you would need to keep a close watch on your bloods - especially platelets. All of these are simply possibilities that might be worth raising with your medical team. As you know, I'm not qualified to recommend any of them. On the strictly pragmatic side, if you haven't done it yet (and everyone of driving age should have done so), now might be a good time to set up your advance care plan and medical power of attorney. You might also want to explore your options for palliative care - which as you know isn't a death sentence, but which does give you access to specialist care in helping you and your family to manage the side effects of your condition and treatment into the indefinite future. These simple acts will relieve you of a lot of anxiety and guilt, and let you get on with your life - especially your bucket list and your relationships. Kezza - I hope these comments are at least vaguely relevant and helpful as you deal with your evolving reality. Cheers, Alan
  16. Kezza2

    Is this the end ??

    Thanks for the reply Patrick, was wondering how the Lu 177 was going. If we can get this brain thing sorted, I stiil have to attend to the other bone mets, so to hear your results are promising gives me hope
  17. Nev Black

    Is this the end ??

    Hi Kerry I was shocked to read of your plight this morning. This insidious cancer can strike hard at any time, it seems, on any of us guys with Advanced Prostate Cancer. Your strength at this difficult time, in even making a posting, is inspirational. Please keep us posted if you are able to. We are definitely thinking of you and your family through this. Good luck and best wishes Nev
  18. deanbatt

    Is this the end ??

    So sorry for your condition. I am going through treatment now. Mine seems like nothing compared to yours God bless you, stay strong.
  19. Colin Glover

    Is this the end ??

    Kerry I'm sorry there have been so many twists and turns for little reward. Thanks for talking this morning I hope your radiation gives some hope. Cheers
  20. Patrick Turner

    Is this the end ??

    Hi Kezza2, I'm sorry to read the bad news, I guess your doctor is doing what he can for you. I'd say you need to take it easy, and no matter what happens I hope the doctors at least keep you pain free. I had 4 chemos. Psa went from 12 to 50, then arranged Lu177. While waiting the month I had a 5th chemo that confirmed it was not doing enough. But then Psa went down to 25 before any Lu177, and after 3 shots it was 5. Then docs started me on enzalutamide because it is thought that makes Pca express more PsMa so more Lu177 is attracted to Pca sites, mainly only in bones now. I have no idea if that will make the 4th Lu177 work better, in 10 day's time. I have no idea how long Lu177 will work well for me but so far is seems I am getting a response that chemo could not achieve. I hope you have ppl close to you for support. Patrick Turner.
  21. Kevin Martin

    Is this the end ??

    Hang in there Kezza2, I hope that after the required treatment that the god's are on your side and you come out of it OK. All the best for which must be a traumatic time for you and your family.
  22. Kezza2

    Is this the end ??

    Well gentlemen, This could be it. After 9 ndoses of docetaxel only brought my PSA down to 16, two weeks later it was back to 22, and after four weeks it was 36. I then began to get bouts of dissyness followed by nausea, so med onc sent me for an MRI. I must add a huge complement to QScan, firstly for getting me an appointment when waiting lists are up to six weeks, and secondly for the treatment of the radiographers and doctor at Carindale. The result is I have a number of Mets in my brain, including one at 44 mm across. This is on top of the other bone mets scattered about my body. Unfortunate timing as I had just been signed up for the TheraP trial, but have had to withdraw from that so no Lutetium for me for now. Off to see the Rad Onc tomorrow to see what can be done about the brain mets, and will keep doing updates while able for those who are interested. Just having a bit of trouble typing at present - one of the symptoms, along with numbness on left side of my face. Hopefully Dex will reduce the symptoms over time.
  23. alanbarlee

    New Diagnosis - Our story

    Hi again Pinks, Sounds like your dad would be overdue to switch from Casodex to enzalutamide - a much more potent anti-androgen (tesosterone blocker) - which hopefully he could get in India. Just as good would be abiraterone, which works a little differently, but which would likely be just as good. Again, I'm not clear what the availability and cost would be in India. A third option for discussion with his medicos would be docetaxel - an effective chemotherapy treatment that is now being used earlier in the treatment cycle than it used to be. It has become standard of care for use in conjunction with initial ADT (e.g. Zoladex and Lupron, which chemically do what an orchiectomy does ), in cases where metastases are present. It's great that you're hanging in there for him - he's lucky to have you as an advocate. Alan
  24. Pinks

    New Diagnosis - Our story

    Hi again, hope things are well with everyone. I had a baby, so I have been busy taking care of him. My dad’s 3 months test was at PSA 12. He did okay for the 3 months. He complained about his back when he walked a lot as part of the exercise. So he limited his activities. Now he is up for his 6 months check up. Hedid a blood test and this time PSA has gone up to 58. He had orchiectomy + casodex + tabi (zolendronic acid). Worried all over and looking for advice.
  25. Earlier
  26. Admin

    Smoke Weed to run from reality..

    A reminder to members that importing seeds from the USA into Australia is in breach of at least a couple of laws. So that we are not in breach of any laws, we have deleted the address from our online posting.
  27. Nebula23

    Smoke Weed to run from reality..

    I smoke weed to flesh out reality, not to make a break. I don’t use cannabis because I hate my job or my life. I don’t smoke weed because I can’t pay my bills. I definitely don’t smoke weed to avoid working on my relationship. As a matter of fact, cannabis has done a lot to help my relationship. I am depressed about the state of the world and Donald Trump being the president, but smoking weed doesn’t help me escape those facts. It does make those things easier to process, but I don’t forget them. In fact, this site is one of the sources of my weeds [deleted]. I smoke weed because I’m bipolar and I have a social anxiety disorder, and it helps me deal with it without taking pills. I smoke weed because it helps make me a better person.
  28. PeterA

    MORE LUTETIUM CLINICAL TRIALS ON THE WAY

    Well done Barry! PeterA
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