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  1. Today
  2. Jim has personally assisted me during my advanced PCa nightmare and I am more than happy to be able to help put a fresh Mac on his desk. Cam
  3. Yesterday
  4. Would that I were financially stable, but I am in a similar position as Jim; I will be in dire straits should my aging computer suddenly call it quits. I think you, Nev, have come up with a super idea to help out Jim and get him back online; hopefully his information can be recovered.
  5. Many of you will know that, since he founded this group nine years ago, Jim Marshall has put in an enormous amount of time and effort on behalf of men with this disease and their partners. Some of us know that he also has made a substantial personal financial contribution over the years. The short story is that on Saturday Jim’s seven-year-old computer went bang and cannot be repaired. The sort of YouTube video work Jim does is best done on a powerful computer. Checking on apple.com, I see the price of an updated model of Jim’s current 27” iMac, with plenty of memory, and disk, etc is quite expensive. With the series of (non-prostate) adverse events Jim has gone through recently, I know this is currently beyond his resources. Having been on new-member or existing-member calls with Jim, I know that grateful people often offer to make a contribution, so I suggested a ‘Go-fund-me’ type of campaign. But Jim has always been wary of the group having any member charges or requests for donations which may discourage anyone with limited funds from joining in. So, I am suggesting that a few of us who are financially comfortable might get together and help with at least a new computer. Jim is more comfortable with this. Reply to this email if you feel you are in a position to help, email me at Secretary@JimJimJimJim.com, or call me on 0419 673 096. If anonymity is important, you may wish to contribute directly into Jim’s account: Name: JE & WA Marshall Bank: Commonwealth Bank BSB 064141 A/C: 00400292 Note: Anything you contribute in this way will not, of course, be a tax-exempt donation. If tax-exempt if important to you, you may wish to contribute to PCFA which has always been very generous in its support of this group, and of our leader, in many ways. But, why does PCFA not also cater for Jim’s extra communication and computer needs? You have to go back in history for this. Just as we joined them PCFA made two decisions for all groups: They would no longer pay for a computer for each group; and They would no longer pay the actual cost of phone and internet, giving a fixed allowance of $20 per month for each, for each group, instead. Your executive committee asked to be an exception given the nature of our mission, but PCFA leadership at the time felt unable to make an exception to their new rules. So Jim and Wendy have borne those extra costs on our behalf for the years since. Thank you.
  6. Pinks

    New Diagnosis - Our story

    I hope you are all doing well. Thanks so much for helping me out with your feedbacks and comments. I appreciate it. Would like to update my dad's health. After the severe back pain that day, he could not even walk. His legs were swollen with minimal movement. We had to call ambulance and transferred him to the hospital which is where he is taking the radiation right now. The situation got escalated from just fine to that he could not even walk in just few hours. However, in the hospital, the doctors gave him some injection to help the nerves. That just helped right away. The swollen went away next day, although he could not walk right away. Right now, with physiotherapy he started walking a little bit. The radiation is ongoing and the pain has gone down a lot. Its about 8 days or so in to the radiation. We still have a month ahead of us but it looks like things have improved. But we are hopeful this will give him comfort from the back pain. My dad is also in very good mood now. We are just planning to stay in the hospital until the radiation is complete. Its expensive, but he is getting the best care there. The other thing that helped him is the hospital bed which he can adjust to his comfort. We are planning to buy one for our home so that he can sleep in it in case of any future back pain.
  7. Last week
  8. Patrick Turner

    My Cancer Journey So Far

    Hi Dave, good luck with your treatments. I needed ADT, and EBRT, and to not use ADT meant Pca would have killed me years ago. The added salvation IMRT + Cosadex gave 6 months suppression, Zytiga gave 8 months, then chemo failed after 4 infusions, and I needed to go to 4 x Lu177 + enzalutamide to get Psa from 26 to 1.6 now and trending down, so not its the same as Psa at June 2017. Meanwhile my right hip has gone phut, so no more vigorous cycling. I think all of us who post here are anxious about outcomes and our mortality, and time to our expiry date. I was told I had aggressive Pca, and the doc wasn't wrong. I've had about 6 x PsMa Ga68 scans so that's $4,200, and Lu177 from Theranostics Australia cost $38,400. No Medicare refunds. I will need maybe the same amount of expense again, maybe AC225 if Psa rises and there is enough PsMa avidity, then maybe DNA tests for Bca2 gene, very probably positive because both my sisters got either Oa or Bca, one died fast, the other narrowly escaped, dad's mother had one or other so its in my genes, but there is no full expectation that any PARP drug etc might work. I might haul out my small amount of sativa oil a close friend grew for me in 2015 when pain increases or I've been told "there's nothing more we can do" and Psa runs away fast into the hundreds. Good luck, Patrick Turner.
  9. alanbarlee

    My Cancer Journey So Far

    G'day again Dave, Your PSA history is unusual, to say the least! Do you have Gleason Grade info from an early biopsy? That can be helpful data in prognosis and treatment planning. My only suggestion, given the last PSA and imaging results, is to not let the PCa develop and mutate for too long. Some mutated phenotypes can be hard to treat - although there is promising progress with some of those that can be characterised by gene analysis. Time is on your side. In the meantime, ADT and a growing list of second-generation options are good to keep in your sights. (Recent trials show that these drugs are a good deal more effective than Cosudex / bicalutamide by itself - but your medonc will be across that). Keep up your daily exercise - it's one of the best medicines for PCa. Alan
  10. DaveK1200

    My Cancer Journey So Far

    Hi everyone. It's been 6 months since my last update. My December 2018 PSA was around 8 and had been roughly the same since June 2018. However my March 2019 PSA jumped to 14 which was a 75% jump in 3 months which concerned me quite a bit. I saw my oncologist in March 2019 and was expecting him to suggest going back on ADT, but he told me that the psa was only one part of the overall picture. He said he'd rather see a patient with a psa like mine who wasn't losing weight, had no pain and able to live a normal life than someone with a low psa who was in discomfort and obviously unwell. So we decided to just keep going with the Essiac and CBD oil the same as I have for over 2 years. In June 2019 I had another psa test and I was worried that it might have jumped again, possibly into the 20s or 30s. However much to my relief it went down from 14 to 13. My June 2019 oncologist appointment went well. He was very pleased with the psa result and with my appearance and lack of pain or other symptoms. He pointed out that my latest psa of 13 was almost the same as my psa of 12 when I was first diagnosed December 2016, even though I'd only had 2 months of ADT in that whole time. So because of my overall appearance he was happy for me to keep doing what I've been doing and see him again in 3 months. Best wishes to all. Dave.
  11. alanbarlee

    Results after four Lu177 infusions.

    Great report, Patrick - full of good news, optimism and helpful detail. The ENZA-P (Lu + enza) Phase 3 trial at St Vincents in Sydney will be very interesting: it's based on some good science, so your parallel experience might well be heading in the right direction. Best wishes, Alan
  12. Cam

    Results after four Lu177 infusions.

    Hi Patrick, Very happy to read of your successes and thank you for sharing the information. I’m currently 1 round into Provenge treatment and haven’t started Enzalutamide or Abiraterone yet. Lots of things to consider as the optimum sequencing path is very hard to determine. Cam
  13. Rozi

    Results after four Lu177 infusions.

    Hi Patrick..... thanks for your informative, great news. I am a member of a Facebook group of Aussie partners of men with PC. Two member's partners are on Lutetium-177 trials. One of the guys is my hubby, who has his first infusion last Tuesday. The other guy had his 2nd infusion last Wednesday. I'm so pleased that you've had such a great result. If everyone did, it would be amazing. Would you be OK with me sharing the details you have mentioned? Obviously there's be no name or pointers as to who you are. I also understand if you'd rather I didn't. Cheers...... Roz Brown
  14. Kezza2

    Results after four Lu177 infusions.

    Great to hear your good news. Seems as though you might have it on the ropes for now, with good prospect of an almost complete cure. Your description is excellent, and has given me hope for the future. I am currently weaning myself off dexamathazone post radiation on my head. I have started to recover from the radiation and dex, but it is going to be a slow process. Now I have to rebuild my leg muscle strength before the next step, which is looking like Lu177 towards the end of July.
  15. Patrick Turner

    Results after four Lu177 infusions.

    Hi all. I have just had PsMa Ga68 PET CT scan and blood tests to show what has happened to my Pca at 5 weeks after the 4th shot of Lu177. The Psa has reduced from 26 before I had first Lu177 shot to 1.6 now. All my other blood test numbers are fairly normal. The SUV or Specific Uptake Value for how much Lu177 was taken up after 4th Lu177 in 8 areas of my body compared to after 2nd Lu177 had average value of 0.45, but ranged from 0.126 to 0.9. My doctor laughed at me because I added up the 8 SUV and divided by 8 to get an average. Where there was a low SUV change of 0.9 in PG, the uptake was low after No2 Lu177, and did not change much by No 4. This indicated that if an additional shot of Lu177 would not do much. But basically it could be years before Pca in my PG to becomes a threat. But uptake changes in bones showed much bigger reduction factors, so where the change was 0.126 in a rib it meant that Pca in that rib has dramatically been reduced by Lu177. So my averaging the figures does not give any single meaningful figure to explain the Pca reduction that has occurred. I get on well with my doc who is looking after me at Theranostics Australia and overall, we have agreed about all things, and one thing is now clear, I have had an overall response that was pretty good, and probably worth every cent of the $40,000 it cost me. The scan report goes on to say all mets in lymph nodes are gone, and a long paragraph tells me where there is no Pca, and no signs of abnormality where it would be expected to be if Pca was active, and concludes "there is a marked improvement with normalisation and reduction in areas of previously demonstrated intense activity in the skeleton" OK. I don't mind reading this sort of message from a radiologist! At my last Skype appointment with the doc yesterday, he suggested there was no need to have another 5th Lu177 shot unless the Psa rapidly rose again. But if Psa did rise, maybe I'd have to have another PsMa scan and then a decision would be made or maybe a shot of Ac225 which TA can do if needed. It seems the doc thought just the one would be needed, to do the small amount of work that perhaps the Lu177has not achieved. But its early days so far, and Psa is trending down. I was put onto Xtandi ( enzalutamide ) after my 3rd Lu177, when Psa was 5, and maybe it will continue to help the effect of Lu177. There's a trial of Lu177 + enzalutamide going on at St Vincents in Sydney, so it will be interesting to see results because I've effectively had a bit of that trial idea applied to me. Often trials are done to verify what some doctors have found that patients on enzalutamide or arbiraterone get more benefit with Lu177 than having Lu177 without anything else. Now drugs such as abiraterone or enzalutamide have effects on Pca synthesis until the Pca works out a way to get past these hurdles. But its not entirely known yet if these drugs have a Pca cell killing effect at time goes by after the Lu177 has damaged the Pca cells. There is a chance that I have some mutated Pca that may "take off" in soft tissues or bones which does not show PsMa avidity. But none has been seen so far in scans, but if that happens my doc would steer me to have biopsy of such bone or other mets and then have DNA analysed which is a new idea and then I'd be given the drug most likely to hold that cancer down. This will not be cheap, and certainly not available in any public hospital. There has been talk about use of Lu177 in Canberra where I live and where population is now 440,000, and with many men my age who are getting Pca. But from what little heard from radiologist operating the machine for me he said that maybe Pbs would have to cover the cost before demand increased enough to make Lu177 available here. I did not discuss Ra223 with my doc, maybe it could be a good idea, but I guess that where there was enough lowish PsMa avidity that Ac225 might be more effective. I am continuing enzalutamide for at least another 3 months. I began taking the 4 pills after dinner to see if sleeping was easier than if I took the pills in the morning. I have pain problems with a right hip that are continuing and I am not cycling very far these days, and walking leads to night pain and my doc says that the original 2010 EBRT to PG may have hastened the degeneration of cartilage in hips hence part of cartilage is worn out. Well, I could cycle 200km a week with worn out cartilages in my knees right up the date when I hade both knee joints replaced. Walking was a pain. Now I also had salvation radiation to PG with IMRT by Calypso at Epworth in 2016. It was 31Grey added to original 70Grey in 2010. Now this was applied with X-ray beams through the PG but used 4 different beam directions to original EBRT so no additional damage occurred to hip joints. But the total RT to the plane in which TR was applied was increased and nobody really knows what long term effects could have been to other soft tissues, ie, muscles and ligaments in beam entry-exit pathways. I could understand the reluctance of any doc to operate to fix something because of haemorrhage risk from radiation affected tissue. I hope you all can see the risks of long term side effects from beam radiation. The PsMa scans showed that the results of salvation IMRT were minimal, and the Psa went lower mainly because I was started on Cosadex in addition to ADT just before the IMRT began. I was told the gel pad to protect my rectum from the IMRT would prevent rectum dysfunction but I still had 2 months of bad radiation colitis after that IMRT. At least I didn't get a fistula, which can occur where too much EBRT is used. Last week I conferred with the hip&knee doc who did my knees in early 2017, and he really had trouble reading scans and X-rays, and I learned he's to retire in 6 months, and he really didn't want me on a waiting list for a hip. So I'll get a second opinion from a doc who tells me all about each sentence on the MR1 and X-ray report. My problem may not be from arthritis inside the hip joint. If you were getting a house built, would you not need a builder who could read a plan? So, it ain't over yet. But things are looking up as they say. I wish you all a very happy winter and don't let the cold temperatures get you down, Patrick Turner.
  16. Early notice: New way of reaching our phone-in meetings The old phone numbers and 7701# codes will not work. Our next phone-in meeting is on Friday 28 June 2019 The Prostate Cancer Foundation of Australia (PCFA), who support us in all our activities, are changing teleconference providers. With the new service (Eureka) the big changes are New numbers New code. The 1300 number accepts Mobile Phone calls Guests only need to enter a single Access Code which is dedicated to the Advanced Prostate Cancer Support Group. You will be asked your name before joining the group. The new details (which will also be in each agenda): You must dial in - we do NOT dial you. Phone numbers and code are only in the email. Problem? Contact Jim.
  17. Earlier
  18. Pinks

    New Diagnosis - Our story

    He has Mets on his iliac bone. The tumor is compressed against the spine and that is probably causing the back pain. That is what we were told a month ago when he had some back pain. Yesterday was way severe. He was fine (not this severe pain) the day before. Pain is severe when he lays down. He pretty much sleeps in a chair now. The doctor syoppped honvan. If that is triggering the severe back pain. I will check with him today and update. They are going to discuss with the doctor today. Hope he can continue the radiation to get the benefits. I am trying to encourage him as he is getting frustrated due to pain.
  19. Charles (Chuck) Maack

    New Diagnosis - Our story

    First, Proton Beam is actually no better than photon beam (EBRT/IMRT) - it only costs much more. A thought is since spinal and back issues can come from so many areas/reasons, is his pain more pronounced when he is lying down for the radiation? Radiation doesn't usually cause pain unless there was metastasis in the area of pain. It may be simply the having to lay down for the radiation that is irritating whatever else is going on with his back. Will be looking forward to a post that explains that they found out what his problem actually is causing the pain.
  20. Bruce Kynaston

    New Diagnosis - Our story

    Sorry, but I can only say it is between the patient and his doctors. My sympathetic thoughts for him, I realise are of little help. best wishes, Bruce.
  21. Thanks Jim. I am off to see my medonc today, and a follow=up with my GP, so I will give Barry and you call tomorrow
  22. Pinks

    New Diagnosis - Our story

    Hi all, So my dad started the radiation for his back pain. Its the 5th day. He was on Honvan and the oncologist stopped it. His legs are pretty swollen which is a side effects of Honvan. But Oncologist doesn't think Honvan caused it. He has reviewed all the mets and scans, he thinks its something else. Today, my dad is having severe back pain. He is really getting frustrated and very low mentally. Is this normal to have pain during radiation? What can we do help his pain? Its so confusing. Also, does he have to be any medication (like honvan) while going through radiation?
  23. Kerry Barry Elderfield has a fairly comprehensive data set in his head. Can I suggest you give him a call about the lutetium story? Please call me after that if you want to talk through the choices you face. Jim
  24. Thankyou to all who have provided their experiences with Denosumab et al. However, a trend seems to be developing within those who have received Lutetium 177. While initial results appear good, in a number of instances (as above) they do not seem to persist. Now, not wanting to pre-empt the results of the trials, this information would be very valuable to those of us who are not yet on Lutetium, and / or are contemplating our next move. I am currently trying to decide between : 1/ Being included in TheraP trial - PSa currently 89, and first possible Lu177 treatment 23July. (ie do I hang out for 6 weeks ??) 2/ Starting Cabazitaxel immediately (which would preclude me from the trial), or 3/ Borrowing $10,000 to start Lu177 immediately (which would probably also preclude me from the trail) and lock me into the full cost user-pays regeim. Is it possible for those who have had or are having Lu177 to let Jim know their current situation, and for this to be developed as an anonymous data set ??? It would certainly help in my decission making.
  25. H Alan, Thank you for your advice, my oncologist has recommended EBRT in my case as the first approach, so I am going through 5 weeks of radiation with total of 25 grey. I hope it is successful and keeps my Psa low Regards Walter
  26. Greetings Jim, I have completed 4 Lutetium treatments which brought my PSA down from 730 to 70 but after 2 months as it is back up to 310 a 5th. round is being considered. Back in 2016 monthly Denosumab (XGEVA) 120 mg. was added to my 3 monthly Zoladex injections, as I am facture free perhaps this supports the observation you have posted.
  27. G'day Walter, My only contribution on the basics is to mention conformal 'external beam radiation therapy' (EBRT) vs the more precise and higher energy 'intensity modulated radiation therapy' (IMRT). To further protect sensitive nearby rectal tissue from radiation scatter, a spacing gel can be used. You may want to explore these aspects with your radonc. Low-dose and high-dose brachytherapy are well covered in Jim's response. One advantage of HD brachy for some men (e.g. where travel or personal commitments are an issue) is that it doesn't require multiple treatments. One distinction between RT and surgery (RP) is that in the case of the latter, the pathologist gets to have a good look at the gland after removal (especially Gleason grade), which can be helpful in prognosis and selecting treatment if needed down the track. This is obviously not possible after RT. The efficacy of RT in general seems to be similar to RP (surgery), although the side effects are different (e.g. brachy MAY be associated with better erectile dysfunction outcomes), but these can be specific to the individual, and the pros and cons of all this should be discussed with your docs. Stereotactic radiation (SABR) is highly precise high energy radiation via a linac or Cyberknife, and is usually reserved for treatable metastatic tumours (generally 5 or less). That's about all I can offer. Good luck with whichever treatment you and your docs settle on. Cheers, Alan
  28. Early last year I was given 3 bi-monthly shots of Denosumab over 4 months, and not long after and before the next shot was due I got a sore lower right jaw, and the beginning of hole in skin covering jaw, ie, the start of lower jaw necrosis. I refused to have another shot, and a dentist found the skin hole and an oral surgeon confirmed dentist was right. So, I searched around online and found that a man only needs 1 dose each 6 months, because its effects fade down, and having 3 times the normal amount while having been on long term ADT there is a big risk of jaw necrosis. I also read a German report from 10 years ago that said any tinkering with bone density with drugs did not reduce the chance a man would get bone mets. Some docs believe bone medications slow down or prevent bone mets forming. Well maybe. But I think my bone mets may have begun before diagnosis in 2009 with a Gleason 9 when I was wonderfully healthy and cycling fast over long distances, and with above average bone density. I bet its now low, and because of arthritis in a hip, I can't cycle, let alone jump about in exercise that is The One Thing that promotes bone health, even when a man is on ADT for years. The last MRI some 6 weeks ago of my R hip indicate bones are OK and sure, the 2 pea sized mets are there, but not yet big enough to cause bone weakness and fractures. I have PsMa Ga68 scan tomorrow, to review what progress if any has been made with Pca after 4 shots of Lu177. I might need a 5th Lu177. I'm on Enzalutamide since a month before 4th Lu177, and this is supposed to supercharge effect of Lu177. Well maybe. Maybe Psa zooms up instead of down. But I may never cycle again. OK, so I just potter about at home. I'll swim again next summer, but an hour in the water is nothing like a good hard cycle ride of 3 hours. And swimming does nothing for bone density and a radiologist who did a BD test years ago told me he had 25yo elite swimmers from AIS who had real fragile bones, because there is no weight bearing and no impacts. Astronauts returning from 6 months at a space station are in a terrible state, bone and muscle wasting.... We NEED gravity. Biophosfonate acid or Aclasta was a drug I was given maybe 2014, and its effect is permanent, and can also cause jaw necrosis. So having too much of this is irreversible so the lower can get big holes in bone and flesh, QOL goes out the window..... Keep well. And was it not just so wonderful when Ashleigh Barty won the French Open? What a gal ! Patrick Turner.
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