Please welcome new member Sneddoh. G9 here with some questions.

Please welcome new member Sneddoh (John) who posted in a long-running thread.
John: I've started a new thread for you so the guys can say hello without needing to scroll to the bottom of page two to see your questions. Welcome to the forum. We're glad you found us but sorry you needed to look.
PeterDisAbelard

John said:

Hi, I am new to this forum, also a member of the G9 club from Australia.
I was diagnosed 4 years ago April 2020 after been referred by my doctor because my PSA had been rising steadily over the past few years - PSA was 3.2 at time of referral.
After biopsy I was labelled G9 (4+5) and decided on a radical prostatectomy. By all accounts a success, clear margins and lymph nodes.
PSA <0.01 for 18 months then slow rise over the next 18 months, Urologist referred me for radio therapy when PSA reached 0.12. Radiologist pushed my bloods out to 4 months from regular 3 monthly and PSA jumped to 1.6.
I am kicking myself as the subsequent PET scan showed the disease had spread and I am now incurable (but manageable). The cancer burden was very low but present on my spine and some lymph nodes.
I was started on Lucrin (4 monthly) and Daralutamide tablets. PSA returned to <0.01.
Oncologist recommended a course of Chemotherapy (Doxetaxel) - his words "this help long term".
I have now completed the Chemotherapy and I am in the surveillance phase.
Most of my questions get fobbed off which is frustrating, can anyone shed light on how long ADT is likely to work before castrate resistance?
What is the recommended treatment if / when PSA starts to rise again?

John

Your MO hit the disease with chemo early, so cases may not be comparable. DH had surgery, then radiation, then Lupron. The ADT gave him 5 years before he became castrate resistant (he continues to have the 3 month injection). Since becoming castrate resistant, treatment has included Provenge, Xtandi, Lynparza, chemo and Pluvicto. It's been almost 11 years since diagnosis. May this give you hope that your disease can be managed for a long time.

Hello, Sneddoh ~

We welcome you here. You will find support and encouragement here, from our members. We are all in this together, and we support each other, and we welcome new members.

When I was first diagnosed, I came here looking for hope, support, and encouragement. I faced a challenging diagnosis, and hoped I would read a few stories of treatment success.

I was diagnosed in 2013, while still in my 40s. I'm a school teacher, and a new school year had just begun.

My PSA was over 100, and prostate cancer was diagnosed.

It was a sobering day when initial tests and scans showed the prostate cancer had already infiltrated both lungs.

I started on monthly ADT injections, to suppress testosterone. I was on Lupron, then Firmagon, and then Zoladex, which worked even better for me. ADT shots lowered my PSA greatly.

I remain on continuous ADT shots of ZOLADEX, which are given monthly.

Shortly after diagnosis, I pursued upfront chemotherapy infusions, with six rounds of TAXOTERE. These lowered my PSA some more.

In time, several years ago now, my oncologist suggested I start taking ZYTIGA (Abiraterone Acetate), a newer medication then. It has helped me tremendously. Other fellows here have used XTANDI, and had good results.

A few years ago, I also pursued 45 pelvic radiation treatments to the prostate. These radiation treatments stabilized my PSA and have helped tremendously.

I continue to teach full-time. I stay active. I marked ten years of survivorship last fall.

The path hasn't always been easy, but I have stayed determined. Every treatment I have pursued has helped me.

I remain on my daily medication, ZYTIGA (Abiraterone Acetate), and receive a monthly ZOLADEX injection each month.

I see my oncologist every month, and he has looked after me like a brother.

Sending you my supportive thoughts ~

CYCLONE ~ # Iowa State University

PeterDisAbelard. said...
Please welcome new member Sneddoh (John) who posted in a long-running thread.
John: I've started a new thread for you so the guys can say hello without needing to scroll to the bottom of page two to see your questions. Welcome to the forum. We're glad you found us but sorry you needed to look.
PeterDisAbelard

John said:

Hi, I am new to this forum, also a member of the G9 club from Australia.
I was diagnosed 4 years ago April 2020 after been referred by my doctor because my PSA had been rising steadily over the past few years - PSA was 3.2 at time of referral.
After biopsy I was labelled G9 (4+5) and decided on a radical prostatectomy. By all accounts a success, clear margins and lymph nodes.
PSA <0.01 for 18 months then slow rise over the next 18 months, Urologist referred me for radio therapy when PSA reached 0.12. Radiologist pushed my bloods out to 4 months from regular 3 monthly and PSA jumped to 1.6.
I am kicking myself as the subsequent PET scan showed the disease had spread and I am now incurable (but manageable). The cancer burden was very low but present on my spine and some lymph nodes.
I was started on Lucrin (4 monthly) and Daralutamide tablets. PSA returned to <0.01.
Oncologist recommended a course of Chemotherapy (Doxetaxel) - his words "this help long term".
I have now completed the Chemotherapy and I am in the surveillance phase.
Most of my questions get fobbed off which is frustrating, can anyone shed light on how long ADT is likely to work before castrate resistance?
What is the recommended treatment if / when PSA starts to rise again?

John

Welcome Sneddoh (John), from down under! I am BillyBob(Bill) from Tupelo, MS, USA.
We sound almost identical 1st 18 months re: "After biopsy I was labelled G9 (4+5) and decided on a radical prostatectomy. By all accounts a success, clear margins and lymph nodes.
PSA <0.01 for 18 months then slow rise over the next 18 months,". Except maybe after losing my "<" sign at 18 months, it then took me to the 6 year mark to become official BCR. I have had similar questions as you, such as "how long does it work" without unequivocal answers from my HC providers. In fact, I have a thread going on that subject right now. With answers from 1 member here going strong at least 10 years now.

Of course, they were highly suggesting RT even before official BCR, but I was resistant. Because CT and bone scans done locally as well as Auxumin scans done 90 miles away continued to show nothing at all. I wanted to know how they knew where to radiate. They said odds were 3 out of 4 it was in the prostate bed. Also, I kept hoping if 1 lesion could be located, I could get spot RT. I had been consulting with a RT Oncologist about this subject, it seemed like a reasonable plan to him as well as my other docs. Also, at this time, I was trying to get a PSMA scan, which was not quite available yet.

Then, since my PSA kept doubling pretty rapidly, they repeated the less sensitive CT and bone scans locally, just a few months since an Auxumin showed nothing. Quite suddenly it seemed to me, the less sensitive scans done locally showed wide spread mets, as they said "now too many to radiate". Not very many months after a clear Auxumin scan! From nothing on the most sensitive to wide spread on even the less sensitive scan, all within 2021, seemed like a surprising and spectacular advance to me! Lymph nodes, spine, arm, etc. EVERYWHERE EXCEPT WHERE THEY WANTED TO RADIATE, NOTHING IN THE PROSTATE BED! Anyway, skip RT and go straight to chemo. 2.5 years later, things are going very well, seems to me, probably could not be better so far.

John: "Most of my questions get fobbed off which is frustrating, can anyone shed light on how long ADT is likely to work before castrate resistance?
What is the recommended treatment if / when PSA starts to rise again?".

I can relate to ""Most of my questions get fobbed off which is frustrating". On my 3 month checkup a few days ago, I asked again "how long is typical". Since I have remained undetectable for 2.5 years, I was surprised to hear the 1 year is not uncommon. Still, others go for 2 or even more years. So, I guess, who knows? For me, chemo would be the next step, but I have had neither chemo or RT yet, only surgery 10+ years ago and ADT for 2.5 years. Since you have had both, I do not know what the next step would be.

Though they have told me chemo is the next thing for me, I still hold out hope that, if and when scans find something of significance again, we can spot radiate. Start a game of whack-a-mole, so to speak. 1 year scans were greatly improved, 2 year scans even more so. Unless PSA rises, I won't get another scan for 9 months.

Question for you: after you started ADT, but before chemo and RT, how long did it take you to get to undetectable PSA?

Bill

Post Edited (BillyBob@388) : 4/13/2024 9:08:19 AM (GMT-8)