Guest Posted April 3, 2018 Share Posted April 3, 2018 Hi All, My husband Terry was diagnosed with mCRPC in September 2016. After Brachytherapy he has tried various treatment which have all eventually failed, including Zytiga and Docetaxel. At present, he is having radiotherapy on the spine to prevent paraplegia. He has been told this morning from his oncologist that Lu177 may give him only 4-6 weeks. Has anyone had a similar diagnosis or experience they would be willing to share? Many thanks, look forward to hearing from you. Tricia (Terry's wife) Link to comment Share on other sites More sharing options...
pauldhodson Posted April 3, 2018 Share Posted April 3, 2018 Hi Tricia, I'm no expert, but I think with Lu177 it is fairly unpredictable as some guys seem to do very well and some do not. I met with Dr Nat Lenzo in Perth a couple of weeks ago and he's the leading Lu177 Doctor in Australia, having treated over 100 PCa patients. He told me 60% to 70% of guys respond and some not very much and some, who have more mets than bone, respond extremely well. He sees patients in Perth and Sydney, so I would suggest you get a GP referral and send it through tho his team at reception@theranostics.com.au. Don't get your hopes us too high and bear in mind it is $9,600 per infusion and usually patients are given 2 to 6 infusions. I hope this helps. Link to comment Share on other sites More sharing options...
whatmeworry1941 Posted April 3, 2018 Share Posted April 3, 2018 My father isn't quite at the mCRPC stage. But I did ask his Oncologist about the Lu177 trial and Radium-223. He said Lu177 was promising in some circumstances but had some toxicity issues in some patients. Radium-223 he said might be better with different mets. Link to comment Share on other sites More sharing options...
TONAR Posted April 3, 2018 Share Posted April 3, 2018 Hi Tricia and Terry, I have had three treatments with Lutetium-177 at 6-weekly intervals. I have had no significant side effects. My PSA has dropped from 65 to 13. I had previously failed Xtandi and Docetaxyl. There is currently a nationwide clinical trial of Lutetium vs Cabazitaxel. I think they are still recruiting for that. Best wishes, Tony PS. Here is a brief video of the Lutetium treatment: http://www.9news.com.au/health/2017/05/17/19/29/new-prostate-cancer-therapy-delivers-promising-results Link to comment Share on other sites More sharing options...
Brian Lawrenson Posted April 3, 2018 Share Posted April 3, 2018 Hi Tricia and Terry. I have had treatment with two doses of Lutetium 177 organised by Dr Nat Lenzo. He is based in Perth but has a clinic at Macquarie Imaging Centre, Sydney. He is definitely worth talking to. The treatment worked wonders for me and cleared out all of my mastacises PCa. My PET scans looked like a Dalmation dog before treatment and I had been given a warning of 18 months to live. Well after the treatments that had absolutely no side effects I can report that the scan now show no cancer and my PSA is 0.22. My life is completely turned around after the past five years of trying to find a treatment that works. I have changed both my urologist and oncologist as both said that the Lu177 treatment is "unproven" and they couldn't recommend it. I'm not suggesting that you do this but getting another opinion seems like a good idea. Currently the researchers are bulding new compounds to use to test whether the Lu177 will worlk. It doesnn't seem to on about 15% of patients. You might ask about this. I'd also suggest that you follow up on the trial. Your GP should give you a referral to Dr Lenzo. Best wishes Brian Lawrenson Sydney Link to comment Share on other sites More sharing options...
nomads Posted April 3, 2018 Share Posted April 3, 2018 If it can be of any help, here is are links to studies that may also provide some more info to your oncologist, who obviously hasn't had the chance to read them: Abstract Prostate-specific membrane antigen (PSMA) is a promising target for the diagnosis of and therapy for metastatic castration-resistant prostate cancer (mCRPC). The aim of this study was to measure overall-survival (OS) in mCRPC patients who received either abiraterone or enzalutamide prior to PSMA therapy. The second aim of this study was to analyse the predictors of OS according to different pre-therapeutic parameters and also the responses to the first cycle of radioligand therapy (RLT) base on PSA level. Patients with mCRPC and a history of therapy with either abiraterone or enzalutamide or both, were included in this study. Different laboratory tests and pre-therapeutic parameters have been included into the analysis. One-hundred patients received a total of 347 cycles of Lu-PSMA (median: three cycles). 69 patients showed a decline in PSA two months after the first cycle, and 38 of those patients showed a PSA decline of = > 50%. The median OS was 60 weeks. In the multivariate analysis, the level of albumin, AST and haemoglobin, existence of liver metastases and a decline of > 14% in PSA level had a significant impact on overall-survival. The median OS is significantly longer in patients without hepatic involvement, with high levels of albumin and Hb and low levels of AST. A decline in PSA levels of more than 14% was the most important response parameter with regard to overall survival. https://www.ncbi.nlm.nih.gov/pubmed/29262549 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355374/ https://www.sciencedaily.com/releases/2017/01/170105123220.htm Link to comment Share on other sites More sharing options...
Johnno Posted April 4, 2018 Share Posted April 4, 2018 Hi Tricia I had radiation to the sacrum and was told it was that or a wheelchair. That was the first area that they discovered metastatic spread. After 7 weeks of radiation I waited another 3 months before any imaging was done because of the inflammation from the treatment. I can't quite work out the 4-6 weeks your oncologist has mentioned as I would be expecting some positive results from the radiation treatment first before any life span was considered. The radiation did it's job for me as far as the spine was concerned, unfortunately the cancer had spread to other organs. My advice for you and your husband is to stay positive, don't ask for a use by date and stay in touch with the good people in this community forum. Believe me there are inspirational stories from long term advanced cancer members here so you're already doing the right thing. Good luck Johnno Link to comment Share on other sites More sharing options...
Guest Posted April 26, 2018 Share Posted April 26, 2018 Hi all, Terry has spent 5 weeks in hospital recently, so I am sorry I haven't responded sooner to all the wonderful suggestions and advice. It is early days but we seem to be having a good response to the first Lutetium treatment, naturopathy supplements, bone broth and exercises. Dr Nat Lenzo and associates have been tremendous, even to the extent of a Skype consultancy and second opinion because Terry was still in hospital and unable to travel. Many thanks for all the advice and responses that were forwarded to us. I and our family can't thank you enough for your support. This forum has confirmed we are not alone with this battle. Kind regards, Tricia Hollyoak Link to comment Share on other sites More sharing options...
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