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  2. VICTORIAN MEMBER - GET TOGETHER It is great to put faces to names at our local catch-up meetings. We are well overdue for a Face to a Name Meeting for Victorian members! It was great to see 14 or so members at our last catch-up including a few new faces. So our next get together will be held at Glenroy RSL on Saturday 21st March at 11.30 for 12.00 pm lunch. The RSL is located at 186 Glenroy Road, Glenroy. Members and partners from anywhere in world visiting Melbourne are welcome to attend. We will as in the past meet in the reception area around 11.30 and then move into the bistro at 12.00 where they have quite a good array of food and an extensive Seniors menu all at reasonable prices. These meetings are simply a chat over a bite to eat for members and their partners and carers to share thoughts and ideas relating to treatment medication and support. The Glenroy RSL was initially chosen because of its central location. It is readily accessed from the Hume Highway and the M80 - Metropolitan Ring Road with free parking available on site and we have always found the staff to be friendly and cooperative. Please note this date in your Diary now "21 March 2020" and please don't forget to reply and let us know if you are coming - so we can estimate numbers for the bistro. You can reply in this forum or email Steve at cavillsteve@gmail.com Alan, Barry and Steve
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  4. John B

    Rising PSA immediately post RP

    Thanks Barry thats helpfull and I will raise the issues you mention with my doctors. Regards John
  5. Barree

    Rising PSA immediately post RP

    ◦ Hi John, In respect to your ongoing treatment, I am not a doctor and not privy to the information your Doctors have about your case so I find it difficult to comment constructively other than to say that SBRT is only as good as the experience that the radio oncologist has who is supervising and planning your treatment. When discussing radiotherapy to a tumor which is very close to your bowel - has your radiation oncologist mentioned the possibility of using SpaceOAR.It is relatively new. It is used to expand the gap between the bowel and the tumor when they are in close proximity and you are about to be treated with radiotherapy. It significantly reduces the risk of side effects of radiation impingement upon the bowel. If you have not heard of it, I suggest you ask your Rad Onc whether or not it might be useful in your particular case. Another thing I feel worthy of mention at this stage - and that is the type of ADT treatment used at the commencement of your treatment. This is something you could ask your medical oncologist about; it’s one of the newer ADT treatments - Firmagon. Whilst is has more side effects than the normally used antagonists it is very effective. It quickly drops the testosterone level to zero and prevents the flair associated with other hormone treatments, even if you do receive pre treatment with Androcur or one of the other anti androgen's such as Casadex (bicalutamide).Its worthy of consideration. Cheers , Barry
  6. John B

    Rising PSA immediately post RP

    Thanks Barree Things have moved on a bit further since my post. I saw a medical oncologist yesterday and he had spoken to the RT Oncologist and other doctors in the team and was proposing that the one lymph node be treated by RT ablation becasue of its proximety to the bowel, then start hormone therapy, then after a couple of months radio therapy to the area of the other two lymph nodes which are above the bladder and would not risk damage to the bladder or bowel. He was advising it would be worth doing the localised treatment but interestingly the Surgeon (who was not involved in the discussion) has seperately just advised hormone therapy. All a bit confusing, but as long as the two localised treatments are not going to cause other problems it would seem worth dealing with the three problem Lymph nodes definatively and then using hormone treatment to hold off any other developments. I would welcome any further comments you have. Many thanks John
  7. Barree

    Rising PSA immediately post RP

    Hi John, I think the idea of treating you with ADT at this point in time is probably quite reasonable. However prior to committing to radiotherapy, I would wait and see what impact the ADT has. It might do the job. If not, in addition to radiotherapy there are numerous options available to treat the remaining three lymph nodes. Where there is lymph node involvement, systemic treatment with a taxane such as docetaxel is also given consideration. Cheers , Barree
  8. Sydney members only. Sorry for the late notice - life! Convenor Jim Marshall (JimJimJimJim) expects to be at the Four Points by Sheraton Sydney, Central Park by 4 pm today, Wednesday 19 February 2020. Any member who would like to catch up with Jim this afternoon or evening is welcome to join him in coffee/whatever. The hotel is 10 minutes walk from Central station. If you can't walk, Jim can use his scooter to get to Central (daylight hours only ☹️) Jim's meeting doesn't start until 9am. If you are an early morning person, perhaps tomorrow morning? Interested? Contact Jim at: http://www.jimjimjimjim.com/contact-jim.html
  9. Earlier
  10. John B

    Rising PSA immediately post RP

    Hello All Just had a PSMA PET scan and consultation with Radio Oncologist. There were two lymph nodes above the bladder that showed up and one questionable one behind rectum. The Oncoligist considered this was consitent with the PSA level. No indications of wider spread. Suggestion is ADT and possible radiotherapy to treat the area above the bladder. If the third one is cancerous it position is not suitable for radiotherapy treatment and would need to rely on ADT. When having the RP last year the surgeon removed 20 lymph nodes which were clear but I understand the affected ones would not normally be removed. Has anybody had similar situation and any comments regarding treatement? Many thanks John
  11. Just in case anyone wants to continue thinking that fighting cancer is easy, just consider the complexity of DNA of in cancers and why its so hard to make a breakthough to tailor best therapy for a cancer. Here is an interesting article I found about research at Monash Uni. https://lens.monash.edu/2020/02/06/1379630/genetic-secrets-of-almost-2700-cancers-unveiled-by-landmark-international-project It is not easy to translate what is known about a cancer's DNA to therapy to change its behaviour so it just dies instead of live on with un-controlled growth. It seems there's a high concentration of good blokes and shielas at Monash with far more intelligence than I have. just as well. Patrick Turner.
  12. In my last post I got the name wrong for Alan Tounsel wrong, and it should be Alan Trounsel. and there is 2004 profile at https://www.thelancet.com/action/showPdf?pii=S0140-6736(04)16645-2 Landline show on TV did say he is involved now in stem cell research for cancer treatments. Patrick Turner.
  13. After diagnosis in 2009, age 62, I had attempt at open RP in early 2010, which failed, and could not remove PG, so I had EBRT and ADT in the common common procession of drugs with added Cosadex in 2016 + salvation IMRT to PG, then Zytiga, then chemo which failed after only 4 shots, so I began Lu177 in Nov 2018 and had 4 shots up to May 2019 with Xtandi added after 3rd shot. Psa was 25 when I began Lu177, with countless soft tissue mets in lymph nodes and bones, and slight discomfort from some bone mets, the biggest was pea sized in pelvis and femur. Follow up PsMa scans in August 2019 showed all soft tissue mets invisible and bone met lesions healing, Psa 1.6. In Nov 2019, Psa went to nadir of 0.32, but is now about 1.5, and recent CT scan reports said slight activity in a met in a shoulder blade and L5 vertebra. Maybe Xtandi is now failing to work, leaving residual Psa that would exist had it not been used at all but added Xtandi was to boost PsMa expression and make last 2 shots of Lu177 more effective. So far, so good. Nobody has told me I need Pca tumour analysed for DNA to determine if PARP inhibitors like olaparib might work. Today, on ABC Landline, show on TV, they had history of Alan Tounsel's work on stem cells for fighting cancer, which have so far been giving some good results. Alan Tounsel worked on IVF for sheep, and that worked to led to humans, and there are now about 10 million IVF ppl born as a result. So he might just be the man to give us all the break through with stem cells. It may be quite a while before human trials with Pca are done, but I feel it will be inevitable. I could imagine becoming Pca free, getting right away from ADT, maybe taking pills to get testosterone to normal levels, and then getting 5kph added average speed on my bike, and living very well beyond 80. Meanwhile, I am in wait and see mode, and I bet Psa will be 5 in 6 weeks at my next talk to oncologist, and I'll ask for another PsMa scan and maybe have another 5th shot, perhaps with a small amount of added Ac225, which Theranostics Australia suggested may be needed when I last spoke to Dr MacFarlane who was one of the two doctors who presided over Pca patients needing nuclides. Last week I cycled 207km, with 87km today, week before I did 211km, and average speed was good for my age at 72, no aches and pains on bike, so I seem to be maintaining my position as healthiest stage 4 cancer patient at Canberra Hospital. I was not in any trial of Lu177 in Melbourne at Peter Mac in 2016, but Professor Hoffman seemed to be right on the ball, and his recent work is excellent, shedding light on why some men who initially look like good candidates for Lu177 turn out to have not such a wonderful outcome, and because their Pca has mutated into types of Pca which don't show up in PsMa scans because PsMa expression is low, so don't attract Lu177 used in therapy. I have faith in my team at CH, a registra, an oncologist, and good responsive Pca nurse. They will refer me elsewhere to get treatment which does not exist at CH if I need it. So I have my Pca more or less under control, my QOL is better than about 6 billion other ppl on Earth, so who am I to complain? I don't attend a doctor to whinge, I ask what can he do, and they don't mind me dressed in lycra because I am doing all I can to avoid maybe 6 other bad health conditions. It does seem many men seem shy to tell other men here of how they fared after receiving LU177, but in other groups they are less shy, and there are mixed results. But if I could not have had Lu177, I'd be in palliative care, to soon begin to un-live. Patrick Turner.
  14. These results are very promising and encouraging for a number of men we know in this treatment in Oz and Germany. Here's a recent first hand report from one of our particpants ..... https://ancan.org/first-hand-radionuclide-psma-experience-in-heidelberg-germany/ O&U, rd
  15. Jim Marshall (not a doctor) said ... A number of our members participated in this first trial of using radioactive Lutetium (Lutetium-177, Lu-177) for men who had already had several other treatments. This is the latest report, quoting the study leader, Michael Hofman at Peter McCallum (PeterMac) in Melbourne. After you read the article, if you want to find out what our members might have said about their Lutetium treatment, go to the Search... box near the top of this page and type: Lutetium ... end Jim https://www.healio.com/hematology-oncology/prostate-cancer/news/online/{4a97c48a-da5c-468d-9b43-1a82912542e5}/targeted-radiation-therapy-yields-high-response-rates-in-metastatic-prostate-cancer The article is not on this site. If you click on the link, you will be taken to a site where we do not control the content. So, please be careful about what you read there, and ask your doctor about anything you read. You may need to subscribe to the site to view the article. If the site is temporarily or permanently unavailable, you may receive an error message.
  16. Hi Greg, I’ve had multiple small doses of salvage radiation to various parts of my body - the criteria used to determine whether or not it is advisable to have repeat doses - is the amount of radiation that has already been given to the area in question. Hopefully, this information will be available from the organization which treated you in the first place. This will enable the radiologists to determine what risk is attached to subjecting the area under the bladder to further radiation. As SBRT has been suggested, depending upon the location of the lesion, it should not be too much of a problem to radiate it without causing collateral damage to the surrounding tissue. I too have read of cases, like yours, where Brachytherapy has been used successfully after IMRT. If you have a very competent radiation oncologist overseeing your treatment - then SBRT may worthy of consideration. One thing that needs to be considered , is whether or not there is likely to be any micro metastasis lurking in the surrounding tissue of the lesion under your bladder which will not be treated by an SBRT beam – this is one reason why brachy therapy is often used in situations like this – if there is any, micro metastasis it will might mop them up. If you choose SBRT I suggest you ask your Rad Onc if your's is a case where the use of SpaceOAR hydrogel may be beneficial. You can google this for an explanation as to why this is sometimes used when treating areas near the bowel with radiation.
  17. I had initial treatment of EBRT and 2 years of ADT beginning in 2010 at 62yo. Psa was 8 just before failed attempt at open RP. 2 years later after pause in ADT, Psa went from 0.08 to 8.8 in 6 months. I re-started ADT and have continued ever since, even though it began to fail in 2016. But in 2016, I had first PsMa Ga68 PET/CT scans which showed 2 lymph nodes positive, and PG was still full of Pca. I had salvation IMRT at Epworth in Melbourne. I also began Cosadex added to ADT. Psa went from 5.6 to 0.4 in months after, but Psa went up again within 6 months so I wondered just how effective added IMRT was. It seemed it didn't kill the Pca it was meant to kill, and hormonal manipulation was all that kept my Pca suppressed, but not dead, because I got more PsMa scans and mets increased. Zytiga gave 8 months, chemo didn't work, and Lu177 brought Psa from 25 to 0.32 in a year, but Psa is now rising again. The total amount of beam radiation I have had to PG is 101Grey, and was not enough to kill the Pca there. Chemo did nothing. Lu177 seemed to work well, but I am having scans again and now face continuing battle because Psa is rising. But Lu177 would have worked in PG, so my PG has had nuclear RT as well as EBRT+IMRT. Perhaps brachytherapy success is due to the skill of the surgeon who does this, but you don't want a hole in your bladder later. When I had salvation IMRT to PG the docs inserted guiding beacons for Calypso IMRT, and although that procedure is minor, the application device had large dia needle about 5mm dia and I don't know how many times they stabbed around to get beacons into wanted position in PG, which had 70Grey in 2010. I bled badly after that op, and got big blood clot but was able to drain it with catheter and I spent 2 days in Epworth that should not have occurred and it cost $1,660. I still bled a bit 10 days later, so tissue that has been radiated years before has blood vessels that never function like non radiated vessels which close off fairly quickly after being cut, and you may have noticed when you have cut yourself somewhere. Epworth used a special pad of material 10cc to make a pad between PG and rectum to stop the IMRT they used affecting my rectum. Beam RT travels through and beyond the target. A month after my RT I had 2 months of very bad radiation colitis where I sprayed poo, and bowel contents. Not pleasant, so despite the hydrogel pad costing $2,000, my bowels were much affected by the additional 31Grey to PG. BT may not give this side effect result. The applicator device may have a thin needle, so maybe that part of you bladder won't bleed, and the small Pca lesion will be terminated. I just hope you don't find that 6 months later, other spots of Pca turn up. After 10 years since diagnosis I am still continent. Maybe BT would have been good for me back in 2010, but it was very expensive. But it can deliver more local RT to a target than EBRT without side effects to surrounding tissues, and therefore it may work better. You need to chase that small amount of Pca now because from little things, big things grow, and you don't want that small lesion spreading, but it may already have, and scans cannot see the spread yet because mets are so small. I had a Gleason 9 in-operable in 2010, so it probably had spread widely, but ADT supressed the original Pca at PG and the mets until years later. Patrick Turner.
  18. Can you get a second opinion? We have heard about brachytherapy being used after IMRT salvage - but if me, I'd want to confirm with another rad onc. How many times has she done this?
  19. Has anyone had a second bite of the cherry with salvation radiation. I had an RRP 15 years ago with psa<0.01 then 5 years later salvage radiation again psa<0.01 and now 10 years after the radiation my psa is 0.28. I had a PMSA scan showing a small lesion under my bladder. The oncologist is saying that because my radiation was 10 years ago and likely very healed I may be able to have some targeted radiation directly to the lesion guided by ultrasound. She is saying that some HDR or even seeds could be planted just at the lesion site and will discuss with her colleagues my case and see if I qualify. Has anyone been down this road? Thanks Greg
  20. It is great to put faces to names at our local catch-up meetings. This is a reminder to men and their partners in SE Queensland or Northern NSW. Members from anywhere in world visiting the area are welcome to attend. Saturday 7 March 2020 at the Greenbank RSL. For numbers: RSVP secretary@jimjimjimjim.com or surferscentury@hotmail.com Greenbank RSL is at Hillcrest, near Browns Plains. We will meet in the Gardens Cafe from 11.00am. Lunch will be in Gardens Cafe after 12 noon at our leisure. How to get to the Greenbank RSL The address is: 54 Anzac Ave Hillcrest QLD 4118 Phone (07) 3800 7746 Many ways to get there. This is the simplest to describe. 1. Come along the Logan Motorway. 2. Take the Browns Plains exit on to the Mount Lindsay Highway (Beaudesert Road) 3. Take the Boronia Heights exit towards Middle Road. 4. Travel along Middle Road until the first roundabout. 5. Take the 4th exit so you are coming back along Middle Road. 6. At you approach the highway again, veer left to travel along Anzac Avenue. 7. RSL is 54 Anzac Avenue on your left, car park on your right. If you are coming from the South along Mount Lindsay Highway (Beaudesert Road) 3. Take exit Middle Road towards Boronia Heights So, in short: • Logan Motorway • Browns Plains exit (There will be some roadworks) • Boronia Heights exit • Middle Road • Back along Middle road to 54 Anzac Avenue. Call Nev on 0419 673 096 if you get lost.
  21. mumof2

    mrs

    Ok so has had biopsy and seen the urologist this week has a gleeson score 9 but they say it doesn't look like it has left the prostate area but we have a scan on the the 21st to see the body and see if it has spread or is localised
  22. Jim Marshall (not a doctor) said ... Some printed material for men and their partners available from the Prostate Cancer Foundation of Australia (PCFA) are out of date. The Advanced Prostate Cancer pack (which Tony Maxwell and I contributed to) was published in 2014. A lot has happened since then. Wendy Winnall is looking for advanced men, and partners of advanced men (not necessarily as a pair) to look at what is needed. She needs advanced men and/or their partners for an early evening session in Sydney next Thursday 13 February. You will be paid $80 to help cover your expenses. The Advanced pack can be found at: https://www.prostate.org.au/awareness/for-recently-diagnosed-men-and-their-families/advanced-prostate-cancer/download-information/ ... end Jim I’m writing today to ask for your help. PCFA am looking for people to join focus groups. We are offering an $80 payment as a thank-you for their time. PCFA supply printed and online information about prostate cancer. We are updating this information and creating new resources. These focus groups will help us understand the needs of men with prostate cancer and those who care for them. We are planning 7 focus groups across the country to hear the opinions of the prostate cancer community. In Sydney we are planning two focus groups: 1. Men with advanced prostate cancer. We are looking for men with high-risk, advanced or metastatic prostate cancer. 2. Partners or carers of men with advanced prostate cancer (high-risk, advanced or metastatic). PCFA have hired a research company called Enhance Research to run the focus groups. All information will remain confidential. The sole purpose of this information is to help us improve our resources to better meet the needs of those affected by prostate cancer. How you can help us: Please let me know if you can help. I can be contacted by email: wendy.winnall@pcfa.org.au or on 0425 873 204. Thanks very much for your time, Wendy Winnall
  23. Professor Jeff Dunn AO, Chief Executive Officer of the Prostate Cancer Foundation of Australia (PCFA), has asked me to share his letter to the Toowoomba Chronicle about our late member, David Abrahams: 4 February 2020 FOR IMMEDIATE RELEASE Dear Editor, LETTER TO THE EDITOR Vale David Abrahams I write on behalf of the Prostate Cancer Foundation of Australia to express our deep sadness at the passing of Mr David Abrahams, a long-time friend and tireless Ambassador for PCFA. He will be remembered as a passionate volunteer and a champion for prostate cancer control. He facilitated the Toowoomba Prostate Cancer Support Group over many years and helped to build the Advanced Prostate Cancer Support Group nationally, drawing on his own experience with advanced disease. David epitomised the spirit of PCFA, on many occasions travelling great distances to provide support for those affected, raising community awareness and engaging others in our cause. With the support of his wife Christine and children, David was selfless in sharing knowledge and understanding from his own experience to comfort other men impacted by the disease. In 2017 David was awarded our prestigious Max Gardner Award for Distinguished Service. His contribution was also recognised by his appointment as a member of the Palliative Care Queensland State Committee. He was a respected advocate and inspiration to countless others, relentlessly working to improve outcomes for Australian men impacted by advanced prostate cancer. David leaves a remarkable legacy – a legacy we will always remember. Our heartfelt sympathies go to his wife Christine, his family, and his many friends. He will not be forgotten. Professor Jeff Dunn AO Chief Executive Officer ENDS ABOUT PROSTATE CANCER FOUNDATION OF AUSTRALIA Prostate Cancer Foundation of Australia (PCFA) is the peak national body for prostate cancer in Australia. We are dedicated to reducing the impact of prostate cancer on Australian men and the people who care about them. We do this by: Promoting and funding world leading, innovative research into prostate cancer Implementing awareness and advocacy campaigns and education programs for the Australian community, health professionals and Government Supporting men and their families affected by prostate cancer through evidence- based information and resources, support groups and Prostate Cancer Specialist Nurses Prostate Cancer Foundation of Australia relies on the generosity of individuals, the community and partnerships to carry out our essential work. For further information about Prostate Cancer Foundation of Australia, please visit pcfa.org.au or call 1800 22 00 99.
  24. John B

    Rising PSA immediately post RP

    Many thanks Barree and Nev. I recognise a tendency to want to get on with treatment and make sure I don't miss any oppertunity to deal with the disease but also one of the urologists I saw when I was originally diagnosed suggested it was good practice not to introduce new treatments untill they were needed. I have put 7th March in the diary. Thanks again John
  25. Nev Black

    Rising PSA immediately post RP

    Barree said 'As one that has participated in face to face support group meetings over aperiod of years, one thing I have learned – it pays to hasten slowly.' For your interest John, the next luncheon Face to Face or Face to a Name meeting will be held at Greenbank RSL on Saturday 7 March. You would be welcome to join us. Full details of the get-together will be posted in the Forums next week.
  26. Barree

    Rising PSA immediately post RP

    Hi John, I support the suggestion made by Brian G, it’s good advice. I have been treated in both the Private and Public system and for prostate cancer the public system has a lot of treatment advantages. The disadvantage is you need a lot of patience in the public system and many hours to spare sitting in waiting rooms. However, the equipment available in the public system is up to the minute and clinical trials seem to be brought to ones attention more often in the public system than in the private system. The recent Lutetium177 trial for men with advanced metastatic prostate cancer was conducted at The Royal Brisbane Hospital so they must have the sophisticated facilities required for advanced treatment – this is not a necessity for someone at your stage - but it may be required in the future and it pays to look ahead with this disease. As one that has participated in face to face support group meetings over a period of years, one thing I have learned – it pays to hasten slowly. One common mistake is to approach prostate cancer treatment with the attitude that you will get this over and done with. A measured and well thought out approach to treatment usually results in better outcomes. Good Luck with your ongoing treatment. Cheers, Barree
  27. Peter

    Ian Blake passes away

    Love, hugs and prayers for both of you at this time. regards Peter Casey
  28. Brian G

    Rising PSA immediately post RP

    John I live in Perth and while I can't comment on Brisbane Oncologists, I can on my families' experience with both private and public ones. I and my elder brother (now deceased with PCa after a brave 29 year journey) have both been through the Sir Charles Gairdner Public Hospital Cancer Department and found the treatment to be outstanding at all levels. The radiation equipment and staff are excellent, the support and availability of cancer nurses, nutritionists, counselling, continence support, etc amazing. I imagine your main public hospital dealing with cancer would be similar. By contrast my younger brother chose a private oncologist and was very disappointed with the level of followup service offered and now users the Cancer Council Australia and the excellent services they offer.
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