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G9 update. Slow but steady progression.

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Posted 4/1/2023 5:53 PM (GMT 0)
Stephen, Mumbo,
Thanks for clarification. I've used the dt calculators, (Just wasn't sure what date ranges to use. ie. From 0.1 or just last 3... not that it makes a huge difference. I too get about 2 years.
I'm glad it's currently "stable" and one day at a time. Still planning a psma in the future.
Posted 4/1/2023 8:13 PM (GMT 0)

DjinTonic said...
As we know, the the "official" PSA definition of BCR is 0.2 and rising, but Johns Hopkins docs originally proposed 0.4, because some men have a rise that then plateaus. The consensus is that the later, BCR occurs and the slower the rise, the better the prognosis.

I would even wager that you won't reach 0.5, and even if you do, it may be at an age when it's not a pressing matter or could be treated with ADT alone. The time from BCR to clinical recurrence is 3-8 years, with the average around 5, if I remember correctly. Many men with BCR do not go on to clinical recurrence (detectable lesions), but younger men generally treat BCR out of caution).

PSMA scans are changing the picture, and I, too, may wait beyond 0.2 should my PSA increase.

Djin


From the studies I have read it seems that 0.4 is a value that is more often used for BCR more than 7 years after surgery.
Posted 9/8/2023 4:36 PM (GMT 0)
Another quick check-in.
Hope everyone's summer was uneventful with regard to ongoing medical issues. (And fires and hurricanes)

Another PSA this week.... 0.32 unchanged from June.
Doc today said I have "the most indolent psa he's ever saw for a G9 reoccurance".
I'm not quite sure how to take the stability sometimes. I'm always prepared for the worst but I'll take it as a win for today!

Still waiting for 0.5 range to do psma scan. Hopefully a year or more away.
Posted 9/8/2023 10:33 PM (GMT 0)
Definitely a win!
Posted 9/9/2023 3:26 AM (GMT 0)
Some good news there! Steady & stable PSA reading!

You're staying vigilant. That's so key and essential.

Was very good to hear from you once again. I follow all your posts.

Sending my encouragement your way ~ no one here fights alone!

With my best ~
CYCLONE ~ # Iowa State University
Posted 12/12/2023 3:07 PM (GMT 0)
Another check in.
Lastest PSA 0.43, so still climbing slowly. Still waiting until .5 for a psma scan.

Hope everyone has a Merry Christmas and Happy Holidays.
Posted 12/12/2023 8:57 PM (GMT 0)
Not sure if I would hope that it gets more than 0.50 or not. Good to get a scan underway but also good if it just bounces around below 0.50. I suppose I would get tired of watching PSA and just want to do something at some point.

Otherwise, hope your Holidays are enjoyable and this will be a 2024 issue to follow up on.
Posted 12/13/2023 12:13 AM (GMT 0)
Appreciative of your update.

Always sending you my encouragement and supportive thoughts.

Keep facing forward, and let your doctors lead you forward.

Best to you, in the NEW YEAR to follow!

CYCLONE ~ # Iowa State University
Posted 12/13/2023 9:57 AM (GMT 0)
Mumbo, I'd gladly watch it bounce around below .5 but it doesn't look like that will be happening so hopefully a scan shows something to zap.
Posted 12/17/2023 2:31 AM (GMT 0)
Too Young, PSMA may not show anything at your levels. I had a somewhat similar linear pattern lasting nearly four years starting in Jan ‘15 and rising from .06 to 19 and some change before MO began ADT; knocked the beast down to .16 and that inaugurated a 20 month ADT holiday. Got my first imaged met during that span. Started ADT again in April ‘23 . Got down to .19 by November. In another ADT holiday right now. My experience has been that I have been on ADT only 14 months since Jan ‘15, and though watching the numbers rise in a linear way has not been without anxiety, I think my quality of life has benefited enormously. Nor if I had been on ADT all this time, I am not sure my numbers would be any better than they are now. Wish you well… Bill
Posted 12/17/2023 10:50 AM (GMT 0)
Bill,
I'm basing my theory on hope. I'm really not looking forward to ADT again. By thinking this still can possibly be "cured", with a short ADT/radiation, it makes thinking about it a little easier. I've discussed with my team that the first scan probably won't show anything, but there is always hope of a spot and treatment. New treatments all the time may filter down guys like us while we wait.
This may not makes sense to everyone but hope keeps me going in the dark days.
I'm glad your intermittent treatment is keeping the beast at bay. Was there any discussion of treating the met that was spotted?
I'm sure after awhile the intermittent route similar to yours will be my next ray of hope.
All the best!
Posted 12/18/2023 11:53 PM (GMT 0)
Too Young, Yes the met was treated with standard 5 SBRT sessions in Sept ‘22. Well, these things don’t just get zapped and disappear Star Wars style. So some remnants still there. Hopefully mitosis is inhibited among the survivors. The SBRT did knock PSA down for a few months, but then came charging back. RO did a PSMA - Gallium in Feb ‘23. No new mets. Yippee. But PSA was still rising. Not great. RO was worried that “We are not seeing something.” So back to MO and new round of ADT starting April ‘23. Took PSA down from 18.6 to .19. On a pause now. And it goes on. Best wishes…. Bill
Posted 3/25/2024 3:32 PM (GMT 0)
Time to check in again...
PSA 0.35. so down from 0.43.

We're not quite sure what's going on but whatever it is, it's happening slowly. I'll take it as a slight win for now.
Once again I'm open to interpretations of anyone has insight.
Posted 3/25/2024 3:58 PM (GMT 0)
I'm in the G9 Club so that always keeps you on the toes paying attention. Come May I'll be 4 years cancer free....latest PSA was 0.14 and before that 0.12 and 0.13.......so it seems in my case to has just settled there after a string of 0.05 right after HDR Brachy + 25 EBRT + 2 yrs. Lupron. My Oncologists moved me last week from 4 month to 6 month PSA testing so I took that as a good sign. Being a G9 is very concerning because it is pushing the envelope....hopefully still in our lifetime they'll figure out more ways to help G9 patients stay GT9 and not become G10.
Posted 3/25/2024 6:31 PM (GMT 0)
WayneTX,
I've been on this path since 2011. Lots of ups and downs so we have to take the wins when we can.
I'm not giving up hope for a cure. It's coming!
Posted 3/25/2024 10:54 PM (GMT 0)
See, sometimes PSA doesn’t “hockey stick” off the chart which is a good thing. Enjoy the win and see you in 3 mos,
Posted 3/27/2024 6:38 AM (GMT 0)
I've started a new thread for Sneddoh.
Here's the link: https://www.healingwell.com/community/default.aspx?f=35&m=4339235
PDA
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

Post Edited By Moderator (PeterDisAbelard.) : 3/27/2024 5:49:53 AM (GMT-8)

Posted 3/27/2024 12:13 PM (GMT 0)
Hi John - You should start your own thread, maybe a moderator can move it for you?

There are legendary stories here of men who have gone for many years, 10+, with PCa recurrence and ever evolving treatment schemes. Guessing how any man will respond long term is pretty tough as cancer does not pay attention to any rules. Your oncologist is hitting it pretty hard which is probably good.

There are other ADT related meds now that can take ADT further. There are also the PSMA seeking radiation infusions that show much promise. Never know when the next breakthrough will occur with PCa.
Posted 3/29/2024 12:46 AM (GMT 0)
Thanks very much, I thought I should have started fresh.
Its good to read success stories which gives me some hope moving forward.

John
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