My 8 year update of fighting PCA to a draw.

[Chadsdad]

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.

[GoBucks]

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.

[HopingInNJ in reply to GoBucks]

Hi GoBucks, Are you in that trial?

[GoBucks in reply to HopingInNJ]

No. But following it.

[HopingInNJ in reply to GoBucks]

Ok thanks. I hope it works for many many years for you! What is the name of it, because they always need a name.

[GoBucks in reply to HopingInNJ]

A-Dream. Here's some reading: ascopubs.org/doi/10.1200/JC...

[HopingInNJ in reply to GoBucks]

thank you

[jackwfrench in reply to GoBucks]

Wow! How did you decide to stop?

[GoBucks in reply to jackwfrench]

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.

[Chadsdad in reply to GoBucks]

What is your T-Level presently?

[GoBucks in reply to Chadsdad]

148. Lots of chest hair returned. Some ladies starting to look good.👀

[jackwfrench in reply to GoBucks]

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.

[Yzinger in reply to GoBucks]

can you provide any more details on this National trial? What are the prereqs?

[GoBucks in reply to Yzinger]

I posted a link about it above. The trial is now closed. Here it is:ascopubs.org/doi/10.1200/JC...

[YC22 in reply to GoBucks]

hi so you’re PSA remains low since June 2022 after stopping lupron and Abiraterone? Were you also taking prednisone?

Do you have advanced stage PC?

Are you in the wait and see?

Do you have blood tests regularily?

[GoBucks in reply to YC22]

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.

[Tall_Allen]

I haven't seen a trial of Erleada monotherapy, but the EMBARK trial tried Xtandi monotherapy in recurrent men. Here are the results:

prostatecancer.news/2023/05...

[leo2634]

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

[Brysonal]

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.

Good luck

[GoBucks in reply to Brysonal]

Not madness at all. More like common sense.

[j-o-h-n]

Note: (From the end of someone's bio) I’m above ground, so there’s that.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Conlig1940 in reply to j-o-h-n]

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 " .

Keep on smiling .

[j-o-h-n in reply to Conlig1940]

As the saying goes: "If I’d known I was going to live this long, I would have taken better care of myself".

And you keep on smiling.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Conlig1940 in reply to j-o-h-n]

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 " .

The top of the morning to you .

[j-o-h-n in reply to Conlig1940]

Beneath this stone lies Murphy

They buried him today

He lived the life of Reilly

While Reilly was away

The top of the morning to you too .

Good Luck, Good Health and Good Humor.

j-o-h-n

[Conlig1940 in reply to j-o-h-n]

J-O-H-N Any of your associates had " Monotherapy SBRT " for Gleason 6 or Gleason 3 + 4 = 7 PC. ?

[j-o-h-n in reply to Conlig1940]

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!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[Conlig1940 in reply to j-o-h-n]

Thanks.

[SteveTheJ]

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.