After surgery, radiation, chemo, Lupron and Zytiga have failed mt PSA is rising rapidly (i.e. tripiling every 3 weeks). I am now at a PSA of 54. Starting to get fatigue and nausea as well as pain ( I enquired about pain meds and my OCs assistant said I don’t think it from the cancer). Even though I have Mets throughout my skeleton. I should be depressed but I am starting LU177 PSMA next week at the Mayo and am expecting things to turn around and give me a fighting chance for several years. My OC is aggressive which is what I need.
I’ll keep posting as I start the LU177 journey. Never give up never surrender!!
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Jackpine
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Paul, Nice to meet you and I think it will help both of us if we can share our experiences on the LU177. The waiting to get all the tests and then entered into the study has been a killer. Looking forward to feeling better though
I will keep posting as I go through the study as it will be interesting to see results and how we tolerate treatment. Good luck in getting the LU 177 the waiting is hard. When I knew I was in the study it was am I going to get standard care or am I getting LU 177. I had started getting the information on the sites in Germany and Australia. Would have been expensive but worth a shot.
i have a couple ofc small areas with spread. haven't been on zytiga for 5 months my psa went from last month at 28 now 60. i'm finishing a new tx and am waiting for my other drugs to kick in not worried considering i've been dealing with this for 10years
Did you see the Ken Burns' tv documentary about the Mayo clinic?
I saw most of it the other night. Excellent. You are fortunate to get treatment
there. Good luck to you.
My husband has had PC since 2001. Surgery, salvage radiation, several clinical trials, Lupron, Casodex.....they have stopped the Casodex (to see if that helped and it didn't)
He will be getting new scans next month and possible Enzalutamide.
If I may ask, did the Enzalutamide work for you, and if so, for how long?
Thank you and good luck to you. Thanks for posting.
My situation is very similar. Did not have RP (cancer outside the capsule) so have been down the Lucrin 2yrs / radiation /casodex 2months / Zytiga 8months now PSA rising so am going for Lu177 even though it is not funded in NZ and I have to travel to Sydney Australia. I have not had Chemo and have seen a study which indicates this may give me 55 months. I will keep posting progress. Good luck to you.
Just had LU-177 treatment at Macquarie hospital in Sydney over two weeks ago now, PSA was 18 & rising, first week very tired but second week feal better & blood test in another two weeks could show PSA rise but after that we hope it goes to 0.1 & two more years cancer free.
If PSA still up then i go again & it is good to have a bank manager with a sence of humour!
G ood Luck to you& may God Speed.I just wonder what I am. 18 years out now PSA0.27.I was at 0.29 & it went down? I had a Radical in 2000.I'm going to Sunny Brook Hospital in Toronto in November for my check. i was told 3 years ago I needed radiation to my prostate bed. I went back to my home town & my GP sent a referal
to our only Urologist. Still waiting .He is servicing a population of around 49,000 people.I feel fine so why would I muck up the way I feel now. Risk everything to get my PSA to "0"???I'm 67 now & still strong.
Hi Kenner, beautiful down town of Toronto Newcastle. Our stories are similar.
I am nearly 70 & had radiation 2012 at Marter in Newcastle to prostate & that gave me 4 years untill PSA started to rise again, then reffered to MO & put on Luprin & casodex which really changed my life around. 2018 i gave the drugs up & decided to turn things around? PSA 18 & rising so only thing left was the LU-177 treatment.
That is my history so far governed by a rising PSA which is a level of the cancer cells in your blood samples as i understand it.
My advice is to live your life to the fullest in that beautiful part of the world & as time goes on your urologist will refer you to an MO so take it from there.
My father has his initial consultation in Nebraska for the LU177 treatment. He will be having new blood work done at the end of the month, hopefully he will meet the requirements and then back to Nebraska for the PSMA scan. Not sure at what point he will find out if he has been randomized or not but our fingers are crossed that his tests results are good and gets into the LU177 treatment arm of the trial. If he does he would have his first treatment within the next six weeks to two months.
There is another daughter on here (Daddysdaughter) whose father had his first treatment last month in Nebraska. She said he has already started to feel better. We are all hoping for success with this treatment for everyone. Please keep us updated and best of luck!
I do hope your father is able to get into the study. We found out about 6 days after my PSMA test. It’s a pins and needles waiting period. I just finished my pre treatment scans and will be injected tomorrow morning so I’m looking forward to this next journey with positive outcomes.
I’ve now had 3 injections of LU177 at the Mayo in Rochester MN. I live about 3 hours away so fairly convient. My PSA started at 110 and doubling every three weeks, also had bone Mets from my skull to my feet. I had a choline PET scan the day before my third injection and my PSA was at 1.0 and my scan showed no new metastasis and resolution or shrinkage of all bone Mets. I have new bone and CT scans coming up at the end of the month and will also have a new PSA at that time. Fourth injection early Feb.
So this treatment is working very well for me. Major side effect now is joint stiffness and some mild nausea. Energy is quite good.
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