I just completed 5 years of Eligard, Erleada and Prolia in my 8 year battle. Surgery and radiation details in bio. 4 annual Bone and CT scans have shown NED and my PSA has been 0, T level <10. Side effects have been typical loss of libido, hot flushes, muscle loss with some brain fog. None of these have been terrible, more aggravating than anything. My faith, family, medicine and a pretty good immune system have gotten me this far, and for that I am thankful.
Yesterday I was offered an opportunity to drop the Eligard and start a Erleada mono therapy. This is something I had researched for the past year and thought given the opportunity I would take it. Now I’m thinking, do I want to rock the boat, add fuel to the fire or find out if my treatment has given me a chance to build back some muscle and a little more normal life? I have 3 months to decide a path forward and thought I would run my research through some of you guys.
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Chadsdad
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I spent 4.5 years with lupron & abiraterone. In June 2022 I stopped everything. There is a national ongoing clinical trial monitoring guys who responded well to treatment. So far so good. Still <0.01. Feeling much better and enjoying life. It was scary to do. What you are proposing is a little less scary because you'll still be taking something. Best of luck whatever you decide.
I read about this trial and discussed it with my MO. He'd already had patients take a break. My wife was scared shootless. But my brain fog , weight gain & tiredness was too much. I kept a "brain fog" journal. My favorite entry: did something stupid yesterday but forgot to write it down. My T barely recovered so I'm actually supplementing with gel now. I feel stronger and clearer. Still <0.01. 🙏 I'm blessed or lucky. Doesn't matter.
I had peak PSA of 2.2 and now on Lupron plus Zyt/pred 14 months w no Psa and TT <10 but no MO wants to talk about vacations. Granted I’ve managed side effects, but…. Will watch this and look for more data.
Yes I took Prednisone. My PSA was rising after July 2017 prostatectomy. A scan showed multiple bone mets. I started lupron in November 2017 and Zytiga/pred in December. From January 2018 on I was undetectable. I now have quarterly blood tests. Grateful to be a super responder.
I've been on Zytiga Prednisone and Eligard since 2018 so far so good my Doctor words last week at my appointment was if it's not broken don't fix it. PSA 0.1 since start of therapy. Never give up never surrender Leo
So I started following the de-escalation trials as discussed here about a year ago:
dailynews.ascopubs.org/do/c....
As a result I started working with my own MO on de-escalation so no ADT injection for me at the end of September 23 and so have been on the Apalutamide monotherapy for 13 months
My PSA had been undetectable for 14 months plus I was NED on scans following 7 months of ‘throw the kitchen sink at it’!
Still undetectable today with testosterone rising slowly. Still working full time, enjoying being a grandad, watching Aston Villa with the family and holidays including paragliding in Turkey last month.
I had to add Tamoxofen despite having breast buds irradiated at the start of ADT as my MO explained the risk of boob growth on the monotherapy.
My London MO retired this month and yet to meet the new guy - not sure what he will make of my unusual path
No idea if this is madness but I really felt I needed at least a holiday from the ADT injections.
J-O-H-N Both nearing 100 Bob Hope asked Geo Burns . " Geo , at your age , do you ever think off dying ? " -- Taking a puff on his cigar, Geo replied. " The first thing I do when I wake up in the morning is read the obituaries -- If my name is not there , I have breakfast " .
As they say in Ireland , from an Irishman , born in Ireland and now living in Canada for 61 years . " There are people dying today , who never died before " .
No Associates but I have many Ass ociates. Sorry but I don't know of any which had "Monotherapy SBRT", treatment. However there are a few you can find in our H.U. History file using the string "Monotherapy". Keep Plugging away!!!
I did exactly that and it's working fine so far. 3 consecutive years of no tumors on the bone scan. That doesn't mean you or anyone else will have the same result but I'd say go for it. Regular blood tests should show if anything is amiss.
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Adding to heart problems??
new drugs 
Fifth year of my battle
Add Erlanda
Those being treated with Eligard, Erleada and Docetaxel
