Jump to content

Latest Posts

This stream auto-updates     

  1. Today
  2. 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.
  3. Yesterday
  4. 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
  5. 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
  6. Last week
  7. 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.
  8. 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
  9. 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.
  10. 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
  11. 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
  12. 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
  13. 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.
  14. 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
  15. 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.
  16. 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.
  17. 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.
  18. 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
  19. 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.
  20. Earlier
  21. 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.
  22. 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.
  23. PeterA

    MORE LUTETIUM CLINICAL TRIALS ON THE WAY

    Well done Barry! PeterA
  24. [The following article is extracted from The House of Representatives Hansard, dated Thursday 4 April 2019. It was part of the budget reply speech given by Bill Shorten. It is not an endorsement of a political party in the soon to be held Federal Election. There are many other factors to consider before casting your vote. A pdf file of the House of Representatives Hansard Thursday 4 April 2019 is attached. Nev] Cancer is one of the biggest killers in our nation. Not for nothing is it called the emperor of all maladies. One in two of us will be diagnosed with cancer at some stage in our life. One hundred and forty-five thousand of our fellow Australians are diagnosed with cancer each year and 50,000 die. One way or another, we will all witness the ordeal. I saw it with my mum and her battle with breast cancer. Chloe and I have seen it with dear friends of ours—some old, some far too young. Cancer is frightening. It's isolating. It's exhausting. And all too often, though, it's impoverishing. For so many people, cancer makes you sick and then paying for the treatment makes you poor. I think a lot of Australians would be surprised to learn that all these vital scans and tests and consultations with specialists are not fully covered by Medicare. Instead, they cost hundreds of dollars, adding up to thousands out of your own pocket. Australia has the highest rates of skin cancer in the world, and most people pay over $5,000 for the first two years of their treatment. One in four women diagnosed with breast cancer pay over $10,000 for two years of scans and tests. Some men with prostate cancer are paying more than $18,000. And if you're in stage 4 cancer you have to quit work, so your finances are already under horrendous strain. If you live in the regions, there are the added costs of travel and accommodation. Every year, 300,000 Australians who need radiology just don't get it because they can't afford it. That's 300,000 of us. We're a smart country. We've got the best healthcare staff. We are a rich country. We're a generous country, and we are better than the statistics I read out. If someone you love has cancer, you'd sell the roof over your head. If it would help, you'd sell the shirt off your back. But should you have to? Our fellow Australians pay their taxes to Canberra. You pay your Medicare levy. If I'm I elected Prime Minister, I'm going to make sure that the healthcare system is there for you when you need it most. So tonight I'm announcing the most important investment in Medicare since Bob Hawke created it: Labor's $2.3 billion Medicare cancer plan. To my fellow Australians, I'll explain what that would be used for. First, if we win the election, we will invest $600 million towards eliminating all of the out-of-pocket costs for diagnostic imaging. Over four years this will mean six million free cancer scans funded by Medicare—CT scans, PET scans, mammograms, X-rays and ultrasounds—reducing the out-of-pocket costs for cancer patients from hundreds of dollars to zero, and this will apply to MRIs too. Today only half of the MRI machines—that amazing technology—in Australia are covered by Medicare. People in the bush and the regions often have to drive hours or pay thousands. If we win this election, not only will we provide new MRI machines to communities where they are needed most; we're going to change the game. We will guarantee that every single MRI machine which meets national standards is covered by Medicare for cancer scans, full stop. The second part of our plan is to deal with the cost of seeing a specialist. As anyone knows, treating cancer relies on a marvellous team of experts: medical oncologists in charge of your diagnosis and ongoing chemotherapy and immunotherapy, surgeons performing your operations and monitoring your recovery, radiation oncologists designing targeted radiation therapy plans to destroy cancer cells. These appointments are part of your weekly routine, often for years. There are the trips, the waiting, the treatment, the recovery—thousands of dollars. A new Labor government will invest $433 million to immediately cover specialist consultations for cancer patients. What this means over the next four years is that an additional three million appointments will be bulkbilled with no out-of-pocket costs, reducing what you pay from hundreds of dollars to zero. The third part of our plan is our affordable medicine guarantee. Every drug recommended by the independent experts will be listed on the Pharmaceutical Benefits Scheme—not just cutting the cost of your treatment; cutting the cost of your cancer medication too. Cancer is a curse. I wish I could stand here tonight and guarantee that we'll find a cure for each cancer. No politician can give that promise. We will continue to support our scientists in their work. We'll invest in the research and the clinical trials. Until the day that we find a cure, I promise the men and women of Australia this: under Labor, if you're battling cancer, you focus on getting well without worrying about going broke. I can promise you that, if you're in the fight of your life, a Labor government will be alongside you every step of the way. To summarise what our first four years of Labor's Medicare Cancer Plan means for Australians: up to six million free cancer scans, three million free appointments with specialists and an affordable medicine guarantee. This is our vision for the future. This is our vision to build Medicare. We can pay for it and we can deliver it because of our reform decisions. House of Representatives Hansard 4 April 2019.pdf
  25. Charles (Chuck) Maack

    MORE LUTETIUM CLINICAL TRIALS ON THE WAY

    What wonderful news for patients throughout the world. A world-class effort by Australia and the many parties involved to make it happen!. Congratulations, Australia, and we should all pray that events will move ahead rapidly.
  26. The trial is titled "Using Theranostics Early to Eradicate Prostate Cancer and Developing Novel Strategies for PSMA Negative Disease". These clinical trials are headed by Prof. Michael Hofman and A/Prof. Arun Azad of Peter Mac. Recruiting is expected start early next year.Details of these trials will follow later this year. In essence, Lutetium will be given earlier in the piece, Lutetium will in special circumstances be given prior to robotic surgery, Research will commence into CAR T cell treatment for prostate cancer which is not PSMA avid and cannot currently be treated using Lutetium. A dedicated team of specialist Doctors,Scientists and Clinical Researchers at Peter Mac have just successfully applied to the Movember/ Cancer Australia Prostate Cancer Research Alliance for funding of these new Lutetium trials. (see details by clicking this link to the Peter Mac site) http://tinyurl.com/y36xuwqg This is a world-class proposal from a world-class multi-institutional Australian team. Movember and Cancer Australia will jointly provide $4M in funding to the Alliance. In addition generous financial support for these trials totalling $1.4M will also be provided by Peter Mac Foundation, University of Melbourne, Victoria Cancer Agency, Monash University, Epworth/E.J Whitten Foundation, Peter Mac Research Division. This funding will be used solely for prostate cancer research The grant interview team for this project consisted of Prof. Michael Hofman, A/Prof. Arun Azad, A/Prof. Declan Murphy and yours truly as a consumer representative. Hopefully these trials will provide a quantum leap forward for prostate cancer treatment.
  27. I too thought that Tony should have received this years ago.Congratulations, Tony.Very well earned. John Trollor Bathurst
  28. [Please find attached an important announcement from PCFA National Chairman, Steve Callister. The original letter is in the attached Pdf at the bottom of the page. Nev] 3 April 2019 Dear Support Group Leaders, Members and Ambassadors I am very pleased to write to you all this morning with positive news from last night’s Federal Budget, regarding the continuation and expansion of PCFA’s Prostate Cancer Specialist Nurses Program (PCSN). Prostate Cancer Foundation of Australia (PCFA) has welcomed the announcement in the Budget from Treasurer Josh Frydenberg of $17.4m being invested over 3 years commencing 2020-21 for the expansion of PCFA’s Prostate Cancer Specialist Nursing Program. The PCFA Prostate Cancer Specialist Nursing Program provides care and support to men and their families affected by prostate cancer through all stages of their disease from diagnosis and treatment to side-effect management and after care. Many of the nurses attend and participate in Support Group activities recognising the importance of your community initiatives. Currently PCFA has 48 nurses placed in 45 locations around Australia. 28 of these nurses are currently funded by the Commonwealth Government. The balance of 20 nurses are funded by PCFA through community and philanthropic funds. PCFA will be looking at placing the additional 34 new Prostate Cancer Specialist Nurses funded by the Federal Government in the areas of highest need, including regional areas. As per my previous letter, PCFA made a submission to the Government in September last year and have visited Canberra on many occasions since. The current standing of the PCSN program with men and their families, PCFA’s reputation for creating and implementing clinical frameworks for the current program and assistance from the community, such as yourselves has achieved this outcome which will benefit thousands of people. This funding more than doubles the federally funded nurses across Australia and is a testament to the level of care PCSNs provide. I would like to acknowledge those Support Groups who wrote to their local Member and Parliamentarians advocating the recommendation for an increase in PCSN’s in Australia. We thank you for your continued efforts to support men and women who have been affected by prostate cancer, and raise awareness in your local community. Yours sincerely Steve Callister National Chairman Announcement from Steve Callister - Federal Funding for Prostate Cancer Specialist Nurses.pdf
  29. Tony, this is very long and verdure. For so long you have served. I met you first at a meeting of SAC (Suppotrt and Advocacy Committees) of PCFA and you continued on that committee. We submitted a report suggesting ideas for the benefit if those with advanced disease, on which subject you have been a very well informed contributed to the Advanced Group. keep well. Bruce.
  1. Load more activity
×
×
  • Create New...