My 8 year update of fighting PCA to a... - Advanced Prostate...

Advanced Prostate Cancer

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My 8 year update of fighting PCA to a draw.

Chadsdad profile image
28 Replies

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 profile image
Chadsdad
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28 Replies
GoBucks profile image
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 profile image
HopingInNJ in reply toGoBucks

Hi GoBucks, Are you in that trial?

GoBucks profile image
GoBucks in reply toHopingInNJ

No. But following it.

HopingInNJ profile image
HopingInNJ in reply toGoBucks

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 profile image
GoBucks in reply toHopingInNJ

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

HopingInNJ profile image
HopingInNJ in reply toGoBucks

thank you

jackwfrench profile image
jackwfrench in reply toGoBucks

Wow! How did you decide to stop?

GoBucks profile image
GoBucks in reply tojackwfrench

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 profile image
Chadsdad in reply toGoBucks

What is your T-Level presently?

GoBucks profile image
GoBucks in reply toChadsdad

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

jackwfrench profile image
jackwfrench in reply toGoBucks

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 profile image
Yzinger in reply toGoBucks

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

GoBucks profile image
GoBucks in reply toYzinger

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

YC22 profile image
YC22 in reply toGoBucks

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 profile image
GoBucks in reply toYC22

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 profile image
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 profile image
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 profile image
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 profile image
GoBucks in reply toBrysonal

Not madness at all. More like common sense.

j-o-h-n profile image
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 profile image
Conlig1940 in reply toj-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 profile image
j-o-h-n in reply toConlig1940

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 profile image
Conlig1940 in reply toj-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 profile image
j-o-h-n in reply toConlig1940

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 profile image
Conlig1940 in reply toj-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 profile image
j-o-h-n in reply toConlig1940

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 profile image
Conlig1940 in reply toj-o-h-n

Thanks.

SteveTheJ profile image
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.

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