In praise of Orgovyx

How long does one normally stay on Orgovyx ?

Well , after gushing about how great I was doing on Orgovyx after almost 3 months, my PA called yesterday and said my liver enzymes were getting “pretty high”. 50 somethings for 2 of them that commonly rise. I told her I felt great but she wasn’t impressed.
I asked about alternatives and she said there weren’t any - all the ADT drugs had the same side effects and if I had to go off of Orgovyx it would just be radiation.
Has anyone else ever experienced this? I’m thinking they take me off during 5 wks radiation and then put me back on for 3 months? Hardly been on long enough to take a ‘holiday’. Thoughts? Thanks!

Hello, just coming up on 7 months on Orgovyx and 6 months on xtandi
RP 2014 Gleason 3+4
Psa began to rise 2 years ago. Psma showed 3 pelvic lymph node. UCLA treat wit 5 SBRT sessions. 2 resolved one continues to Shrink. Psa down from 3 to .6
Psa began to rise .8
Psma showed new
Pelvic node deemed too small to radiate
Psa down from .8 to < .01
Oncology wants me to continue adt until next labs, urology said ok to take break
What have others seen as to stopping adt with great results as mine with psa starting to rise?? How long after suspending adt for treatment of oloiogmestatic prostate cancer?
My primary issue is fatigue, affecting my pickleball and concerned re upcoming ski season.

Your urologist is no longer the person to talk to, they do not specialize in cancer, you should only be talking to them for urological issues. Dropping ADT would be a major mistake. Your cancer came back and you should be on ADT and probably Zytiga, that is normally the first step once you have metastasis showing up.

You have an active cancer, Gleason says 3+4 but that may not be correct. It might’ve made sense to get a second opinion on your Gleason after the RP.

Not sure where you’re going but a Mayo Clinic sounds like it would be a better choice than your doctor saying check the next labs.

You want to have a Genito Urinary Oncologist handling your case. They specialize in prostate cancer, unlike a medical oncologist who will work with all different kinds of cancer and don’t keep up with the latest developments in prostate cancer.

Dropping ADT now could just lead to your cancer spreading more. Having it zapped with SBRT isn’t enough when your cancer comes back after so many years and is found in multiple places.

Your life is on the line now, be proactive and get the best care.

How long do you stay on Orgovyx depends on what kind of cancer you have and what your Gleason score is. In my case because of the cancer I have I’ve been on Lupron and then Orgovyx for over seven years.

The NCCN calls for 6 months if a Gleason seven, 18 months for Gleason 9, and 24 months for Gleason 9 or 10.

That can vary, depending on how your cancer started or came back

Thanks
I’m at UCLA
3 mds
Urology oncologist
Radiology oncology
And hematology oncologist

If my body would adjust fatigue wise I would have no issues staying on meds
No hot flashes, limited libido and emotional upheaval is quite minimal
Lost 10 lbs likely decrease in muscle mass and less of an appetite

Don’t want to get overly optimistic
They want labs checked again on 2 months

UCLA is it a good place to go and should get you optimal treatment.

Some people on ADT have a problem with 5 mg of prednisone. I attended a prostate cancer webinar last week. One of the doctors that talked has prostate cancer with a Gleeson nine. he had a lot of fatigue on ADT and went from 5 mg of prednisone to 7 1/2 half milligrams. That helped a lot, unfortunately, he also got diabetes and had to cut back.

I had somebody I was working with that had severe fatigue, getting out of bed was difficult, I told him to increase his prednisone to 7 1/2 or 10 mg and his oncologist agreed and put him on 10 mg. It made a major difference in his fatigue. After hearing about the diabetes issue, I told him to get fasting blood test regularly to find out what was going on with his blood sugar, don’t wanna have a problem with diabetes.

I am surprised you don’t have a GU medical oncology guiding your treatment. That is how it is supposed to be done when cancer comes back and you have metastasis. You need to talk to them at UCLA and find out what’s the reason you do not have one, you always have to be proactive when you have prostate cancer.

If you doubt any other things, I am saying I would recommend you come to one of the two hour weekly online meetings for advanced prostate cancer, at Ancan.org. As a new person there you will get priority and they would spend time at the beginning of the meeting, listening to your case your treatment and recommending what you should do. They have 15 years of experience dealing with advanced prostate cancer and there are always two or three doctors at the meetings. Yesterday, two people from this chat group came to the meeting and had a considerable amount of help with their cases.

Thanks for your response. I’m on my second recurrence. My Gleason score is 3+4=7. My current PSA is. 0.97.

Are you on ADT?. .97 is pretty high and makes me think you aren’t on anything because ADT would reduce your PSA much more than that, it could take a couple of weeks.

After my first recurrence 3.5 years after RP I had salvage radiation I was not put on Lupron because that was over 10 years ago and they didn’t have that requirement yet. When my PSA started rising, 2.5 years after radiation, I was put on Lupron. When my PSA start rising again, 4 years later, I was put on Zytiga.

What have you been on?

With early-stage cancer, usually a few months after some other treatment (e.g. surgery, radiation), just to be safe.

With advanced-stage cancer like mine, forever (or until there's some new medical breakthrough).

I suspect many people fall somewhere between these extremes.