How Long on Orgovyx

I was initially on Firmagon (a GnRH similar to Orgovyx, but injected 1x/month), then switched to Orgovyx when it became available in Canada.

I've been on one or the other for 4 years, 2 months (along with Apalutamide), and since they've succeeded brilliantly in keeping my stage-4 cancer in deep remission (PSA < 0.01), there's no plan to stop.

Of course, medical advice may change based on new research, new tests may emerge, or new meds may hit the market, but at the moment ADT-for-life remains the default standard of care for stage 4 prostate cancer.

Thank you!!

I was on Lupron for almost 6 years and Orgovyx for 2.5 years. Before I was on Lupron my PSA hit .2 they did salvage radiation. I’ve been on ADT for about eight years. It stopped working 2 1/2 years after I started using it, and I became castrate resistant. Median survival once you become castrate resistant is 2 1/2 years.. That happened to me six years ago.

I bring that up because you should not just be on ADT (Orgovyx). That drug alone can cause you to become castrate resistant. You should also be on an ARPI drug like Zytiga, Enzalutamide, apalutamide or the best Darolutamide.

Speak to your doctor about this. The doctor should be aware of this problem and be willing to prescribe the other drug for you. If your doctor isn’t aware of this problem that that’s a time to worry.

That can prevent you from becoming castrate resistant and we will keep your PSA down for many years.

Gleason 9, stage IVB here. Also, a CHF patient. Been on Orgovyx since June along with Nubeqa. No surgery due to distant metastases.
There will be no vacation for at least 2 years. (or until they screw up my heart rhythm so much that I will have to make a choice between cancer and heart failure.)

Merry Christmas to all🎅🏼

Did the PSMA PET scan pre-prostatectomy detect any cancer?
> If so, what was that SUVMax score?

How long were you on Orgovyx (for your Gleason 9)?

Besides ADT (Orgovyx) have they recommended you go on an ARPI (Zytiga, Xtandi, Erleada, or Nubeqa)?

What are they doing to kill the prostate cancer?

@brianjarvis
PMSA was done 2 years after prostate removal. No signs of cancer. I was on Orgovyx for about one year after PSA climbed to .9. Orgovyx drove it down to < .01. They don’t have any drug to kill the cancer. I can’t have radiation. So only remedy at this point is suppress disease.

@rnpalarino1 With PSA rising following prostatectomy (indicating likely recurrence), but PSMA showed no signs of cancer either (1) the PSMA PET scan missed it (at a PSA of 0.9, PSMA will miss prostate cancers ~30% of the time), or (2) your prostate cancer is PSMA negative, in which case a PSMA PET scan will never see the cancer.

Note that while you’re on ADT (and your PSA is being suppressed), the PSMA PET scan won’t be able to see the prostate cancers.

If your prostate cancer is PSMA positive, either Pluvicto (Lutetium-177) or Xofigo (Radium-223) might kill the cancer (depending on where it is).

If your prostate cancer is PSMA negative, an Axumin (F18-Fluciclovine) PET CT scan might see the prostate cancer that the PSMA PET scan can’t.

You might consider discussing this with your doctor rather than remaining only on hormone therapy.

@brianjarvis
I appreciate your comments. I trust my oncologist from Mayo Clinic. However just to confirm his treatment plan I was also seen by an oncologist at Johns Hopkins who agreed with Mayo on treatment plan.

@rnpalarino1 Sometimes, PCa cells are so diffuse that no scans can pick them up. Some of the new thinking involves letting the PSA go to 2.0 - yes, whole integers, not decimal fractions.
The idea being that the clump of cells producing the PSA will then be large enough to see on a scan; it can then be zapped with SBRT.
Personally, I am not sure about this because if you let ONE lesion grow to a discernible size, how many more are waiting in the wings to do the same thing?
And then if the lesions are too numerous ( I think anything over 5 of them?) you now enter Pluvicto territory - generalized radio-isotope infusion as a form of chemotherapy… it is, indeed a gamble!
The other option is to follow the advice of @jeffmark and combine the ORGOVYX with Darolutamide - this was you block both the production of T and its binding sites on PCa cells, preventing castrate resistance.
Good Luck,
Phil

@brianjarvis Not all the drugs you mentioned work the same way. In the case of Nubeqa, it acts in concert with Orgovyx . Nubeqa is an androgen receptor inhibitor that works by blocking any remaining male hormones, including the small amounts of testosterone still present in the body from binding to the prostate cancer cells.

Question: Are any doctors recommending drug holidays after 6-12 months when the PSA level goes to near zero? Mine insists I remain on Orgovyx + Nubeqa for two years.