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What if this prevents cancer from becoming resistant?
Prostate Cancer | Last Active: 1 day ago | Replies (45)Comment receiving replies
Yes, Jeff, I've been reading your words ever since, and I've been in awe of your wisdom.
Regarding radiation therapy, I didn't have it. My PSA was 530, with 3 metastases in my bones and numerous lymph nodes.
My PSA dropped to 0 within a year and a half. And I think this long period is due to the fact that Erleada was added later.
After 8 sessions of docytaxel and ADT (my PSA dropped to 6), the PET/CT report (January 2025) stated that most metastases (their SUV) were not detectable in my bones, and the size of the lymph node metastases had decreased and remained. And most importantly, please help me figure this out. The report stated that the SUV of my prostate tumor had barely changed. It only dropped by 10%. In other words, ADT and chemotherapy failed to suppress the cancer.
I was preparing for death back then because my PSA hadn't dropped. And after a very good doctor recommended that I start taking Erleada, and I did, my PSA dropped from 6 to 0 in about six months.
You asked about the aggressiveness of the cancer. How is it determined? By the number of metastases, or by the Gleason score? I have an ATM mutation. Could that make the cancer aggressive?
I've been reading all your messages very carefully. If I understand you correctly, in my case, I should wait until my PSA remains at 0 for at least two years and then try to stop all medications, right?
Please explain to me what it means when report say "my prostate tumor's SUV has remained almost unchanged after chemotherapy."
Bless you and thank you!
Replies to "@jeffmarc Yes, Jeff, I've been reading your words ever since, and I've been in awe of..."
@denis76
The fact that ADT alone could not get your PSA to undetectable, would usually mean you are castrate resistant or hormone resistant. Did your doctors ever mention that to you? You might want to ask if they consider you castrate sensitive or castrate resistant.
When my PSA started rising while I was only on ADT, they put me on abiraterone And that brought my PSA down again. I was castrate resistant they said because ADT alone failed and was unable to keep my PSA undetectable.
Either the fact that you became metastatic before you were diagnosed, And that it was spread in multiple places, More than five, Usually results in triplet therapy, which is exactly what you appear to have gotten eventually. You started off double with just ADT and chemo. I’m really surprised your doctors waited so long to add the ARPI (Erleada). The standard of care calls for triplet therapy with what you had originally so waiting so long for Erleada Was a little late.
You say you think you should wait two years undetectable, 1 1/2 years may be sufficient. I know people that had serious cases like you have and didn’t wait two years. The true test is, when you stop taking the drugs. Does your PSA rise real soon or does it take a while. You could very well get a year or two with no rise
The SUV is how disease progression is measured. The fact that the SUV stays the same or goes down is a good indicator that it’s not spreading anymore in that area. The higher the SUV number, the more aggressive the cancer is in that particular area.
The aggressiveness of your cancer is measured by all of the things you mentioned. The Gleason score and the number of metastasis are a big indicator. The fact that you went directly to chemo is an indicator that it’s very aggressive.
As for ATM, It does add to the aggressiveness. @dinu This is one of the participants in this forum. He has ATM and has had problems getting his testosterone down with just Lupron, He just had a prostatectomy because they caught it early, but his cancer is aggressive. I’m including him here because you two should probably talk to each other about it. There’s at least one other person in this forum with ATM. Ancan.Org Has a quarterly meeting with people that have genetic problems. You might want to attend one and ask questions about How ATM affects your prostate cancer?
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@denis76 Yes, Erleada (Apalutamide) has been a magic drug for me, too.
Granted, it's distributed by a big evil Pharma multinational (Johnson & Johnson), but so are Xtandi (Pfizer) and Nubeqa (Bayer), so not much to choose from there. 🤷
As I mentioned earlier, I'm waiting to see the results of the big phase 3 LIBERTAS trial to see if it's safe for exceptional responders with mCSPC (like you and me) to drop ADT and stay on just the Erleada.
The EMBARK trial that you mentioned ended with a negative result for Xtandi, another -lutamide, but it's 8 years later now, and a lot of other things have changed in prostate-cancer treatment and detection, so 🤞