puzzled with Orgovyx

[woppaginny]

First of all my score was 7(3+4) 6.5 to 7 years ago. I was taking nutrients and vitamins to fight the cancer which was working great until I had kidney stone surgery. Psa shot up to 101 which is when I stopped my self medication and then started the casadex which then brought my PSA down to 3. I was on casodex for 2 years then it slowly stopped working. My PSA shot up to 37. Then Doc said to try orgovyx. Started orgovyx last month. This is starting my second month. When I started orgovyx, my PSA was 37. Three weeks into taking orgovyx my PSA dropped to 3, now a month and a half into taking orgovyx my PSA came back. as 5. A week ago jt came back as 7 and today which is my latest PSA test, my PSA test came back as 8.

Seems like orgovyx is not working for me. Doc suggested I have PSA check in one month to see if it lowers. Cancer is still contained wthin my prostate after 6 years fighting this. Trying to avoid radiation as long as I can but seem like the time has arrived to consider it as much as I hate to. No, I will not have the prostate removed. Been avoiding that too. Stupid, probably, but I have sten what radiation and chemo has done to my frieds with prosate cancer

Any suggestion?

[Tall_Allen]

I doubt that the cancer is still contained within the prostate. Imaging does not show what is there, it only shows larger metastases. You have a condition called "non-metastatic castration resistance." There are 3 advanced hormonal therapies approved for it: Xtandi, Erleada, and Nubeqa.

You can try prostate radiation too, but it may or may not slow progression.

[woppaginny in reply to Tall_Allen]

Don't know a wkole lot anout it but the last pet scan which was 3 weeks ago, showed still contained

[Tall_Allen in reply to woppaginny]

PET/CT has a size limit of 5 mm. Your PSA demonstrates that there are micrometastases.

[MiRob]

Hi I advise you to get a PSMA PET and NAF to get real facts about where your cancer is. With a PSA before treatment of 101 chances are it has spread outside the prostate. You and your doctors need to get the facts on this.

[woppaginny in reply to MiRob]

Had a PSMA PET 3 weeks ago. Came back still contained in the capsule. What is a NAF. Please fill me in

[maley2711 in reply to woppaginny]

another type of tracer used in a scan? as others have said...it may be too late to derive big benefit from prostate radiation, no matter what the scans show. However, you could be lucky, and all that PSA increase could be a result of mutating PCa that is still contained in prostate. Perhaps your Docs can provide some statistics on the probability it is still contained. Also, if there is metastais but only within regional lymp nodes, you might be lucky and have success with whole pelvic radiation. Everything is a game of probabilities when it comes to PCa and treatments.

FYI....

ncbi.nlm.nih.gov/pmc/articl...

bjui-journals.onlinelibrary...

[j-o-h-n]

Cure? What's that?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/17/2023 6:07 PM DST

[Cooolone]

Not sure what your goals are... But it appears to not use any drastic therapy and only treat the cancer with drugs? Is this correct?

Again, personal and individual decisions certainly shape our paths on our journey. But being dismissive as to what might be the best course of therapy for a given diagnosis certainly also dismisses possible results.

Point is, as Patients, we can chose to take a path untraveled, and reap those results. We can also chose to follow a well traveled path with demonstrated results within a given variable. But thinking we can outsmart the cancer itself? Ehhh...

So I wonder if you're currently receiving care at a Major Cancer Center, and one rated in Excellence? You also have some tests that have been done but done mention those results or your complete diagnosis up to this point. Has there been a biopsy given the prostate is still there and untreated? I agree that it would appear that two things are occuring, one, that your PCa after years of drugs 'may' have become resistant to them. And that this has allowed micro cellular changes to occur allowing the disease to spread. I'm not a doctor though...

Anyways, getting to one of those COE's will offer you the very best opportunity to have the BEST diagnosis, and treatment avenues opened to you. Make no mistake about it, travel if you must, don't skimp!

Best Regards

[AlmostnoHope]

Talk to Vincent at PCSPES.NET. He saved my life.

[JPnSD in reply to AlmostnoHope]

A touch of science would be a nice addition to this site you reference.

[AlmostnoHope in reply to JPnSD]

There us plenty of science over 30 years of it. The problem is nobody on here listens.

[ron_bucher]

I had radiation of the local area in 2007 and radiation of more lymph nodes in 2017. My side effects have been very minimal. I had an outstanding radiation oncologist, and that can make all the difference. My side effects from radiation were next to nothing compared to my side effects from ADT.

[Tommyj2 in reply to ron_bucher]

You were expecting different?

[woppaginny in reply to Tommyj2]

Not really