getting off Orgovyx

[despurato]

Just left MO. I will be getting to stop Orgovyx in a few months after being on for two years. I started abi and prednisone five months after Orgovyx and will have to continue on those until I reach the two year mark. Will my testosterone start rising just by stopping Orgovyx?

[God_Loves_Me]

Please do PSA every 4 week.

[despurato in reply to God_Loves_Me]

I really don’t what the protocol will be. I go to MUSC in SC. They are just now letting me do the bloodwork here and a telehealth visit every other visit. It’s a four hour drive for me. This is a blessing in itself. I am also getting treatment for Bladder cancer there as well under another physician.

[despurato]

Thanks for the chart. Just getting rid of the hot flashes will be great. I was so excited I didn’t ask any questions.

[despurato]

They aren’t to the point that I need anything for them. They are just aggravating. Won’t miss them but my better half has to make a comment about them when I have one around her. Lord, I know there’s a chance I might have to go back on them one day but maybe I will be one of the lucky ones.

[ulfhbg]

well, Abiraterone are not really suppose to stop testicles from producing Testosterone because it has another form of inhibition. So it it might be possible that you testicles starts producing Testosterone.

You’re actually one of the first I’ve seen and heard doing the other way around; stopping Orgovyx first and then stopping Abiraterone after that. Actually very interesting and did your doctor / medical team give you information on why they think this is more beneficial or is it only a time perspective, 2 years of Orgovyx and 2 years of Abiraterone.

Anyway, please keep us posted on progress and hopefully the cancer beast is really down in total submission and gone ones and for all 👍😉😇

[despurato in reply to ulfhbg]

The first doctor I had just put me on Orgovyx and with the bladder cancer as well I figured I needed to get to a NCI facility so I have a team now and the first thing they done was add the abi and prednisone. Doing the BCG for bladder.

[Hawk56]

My experience after 12 months on Orgovyx and stopping,,,

Within the first three weeks, noticeable improvement in the fatigue and muscle and joint stiffness.

Hot flashes, like fat cells, stubborn, weren't noticeably different until around the three-month point. Same with genitalia shrinkage and weight gain.

T recovered to 300+ in the first three months, 400+ at six.

Kevin

Clinical History

[despurato in reply to Hawk56]

Thanks Hawk, that’s all good to know. I was just happy to get the news that there’s a chance of back to normal even if for a while.

[Spinel_Cutter]

I don't think it will recover, at all, until you stop both, from perplexity.ai:

Based on the available information, it is unlikely that the man's testosterone levels will return to normal or rise significantly after stopping Orgovyx (relugolix) while continuing abiraterone.

Abiraterone is capable of suppressing testosterone production effectively on its own. It decreases testosterone production both systemically and locally. When used in combination with androgen deprivation therapy (ADT), abiraterone has been shown to maintain castrate levels of testosterone (below 50 ng/dL).

While Orgovyx is a potent testosterone-suppressing medication, discontinuing it while continuing abiraterone should still maintain low testosterone levels. A study mentioned that abiraterone alone was capable of working effectively as ADT, with patients achieving full testosterone suppression (total T less than 5 ng/dL) during treatment periods.

Unfortunately I do not think that your hot flushes will disappear either, from perplexity.ai:

If a man stops taking Orgovyx (relugolix) but continues abiraterone, his hot flashes are unlikely to disappear completely. Both Orgovyx and abiraterone suppress testosterone levels, which is the primary cause of hot flashes in men undergoing hormone therapy for prostate cancer.

Hot flashes are a common side effect of both medications, as they lower testosterone levels significantly357. While discontinuing Orgovyx might slightly reduce the frequency or severity of hot flashes due to its direct mechanism of action, continuing abiraterone will likely maintain testosterone suppression and the associated symptoms.

[dhccpa in reply to Spinel_Cutter]

Thanks. I thought about did suppress T but wasn't sure.

[petabyte]

I was wondering what the treatment duration was for this dataset. Short or long term ADT or mixed?

I have been thinking that since T recovers much more quickly with Orgovyx, we have effectively 3 months less T suppression. And since virtually all trials determining optimal ADT treatment duration used agonists, maybe we should add a couple of months of treatment to be equivalent when taking Orgovyx (I'm on Orgovyx).

[T911 in reply to petabyte]

Some of that time is made up on the other end because Orgovyx is so much faster to lower your T to castration levels.

[despurato in reply to T911]

That’s a very interesting informative perspective. Thanks

[petabyte in reply to T911]

Yes, you gain a month upfront. If you are doing long term ADT it is not so relevant, less than 10% difference. On 6 months of ADT it could be more important.

Edit. I asked perplexity about this (deep research)

perplexity.ai/search/i-am-t...

[dhccpa]

But isn't he still on abi? Doesn't it suppress T?

[petabyte]

Thanks I didn't realize it was from Hero so 48 weeks of ADT sciencedirect.com/science/a.... After two years of treatment recovery will probably be longer.

💯% agree that Orgovyx should be first choice but some doctors (mine for example) are reluctant because of (perceived) lack of "long term" data.

I was the first patient on Orgovyx at my hospital and the other two I consulted had not used it but were open to it (it was only approved here 4 months before).

[Dont08759 in reply to petabyte]

They also make less money as it is a pill….

[petabyte in reply to Dont08759]

I'm certain money has nothing to do with it at the hospitals here...

[dhccpa]

He asked, though, if his T would rise after stopping Orgovyx even while continuing abi.

[despurato]

I was under the assumption that abi just worked to suppress the T from adrenal gland. And, Orgovyx went for the testicles?

[Mascouche]

In my case, the T went down rapidly when I started Relugolix but after 2-3 months it began a slow rise. I have now been taking double dose of Relugolix for 3 weeks at the request of my MO who wants to see if it will have an impact or not. I have blood test scheduled for next week March 12. I guess I'll find out then if the double dose kept the T down or not.

[petabyte in reply to Mascouche]

 Hi Mascouche I'd be interested to hear the results. Is the MO thinking about a malabsorption issue?

[Mascouche in reply to petabyte]

Hi petabyte,

No too sure what my MO is thinking but he is curious about it working initially and then no longer.

Personally, I don't think the double-dose is working as I do not feel worse than on the regular dose, so I am guessing that I am still producing some T. Actually, I think I can tell just by the smell of my arm pits. Just like when I got off ADT the first time, my pits smell like onions even coming right out of the shower when T is coming back. Not sure why that is as they don't smell that way when I have higher levels of T or no T at all, just when I have a little T.

I will try to remember to reply to this post after my appointment this Wednesday. However, as I guess would be the case with most people on ADT, I have next to no short-term memory left. So if you do not see a reply from me, don't hesitate to send me a reminder

[Mascouche in reply to petabyte]

Saw the MO yesterday and did blood tests. But first here is a summary of the past year or so.

***

PSA 2024-06-05 : 1.67. Testosterone: 398

I began Orgovyx/Relugolix 120mg on 2024-06-07

PSA 2024-06-26: 0.06 Testosterone: 28.9

Added Enzalutamide/Xtandi 160mg on 2024-06-27

Received radiation to right shoulder blade. 27 G over 3 sessions of 9G each on 2024-06-28, 2024-07-02 and 2024-07-04

PSA 2024-08-06: 0.30 Testosterone: 28.9

PSA 2024-10-15: 0.50 Testosterone: 34.6

PSA 2024-11-27: 0.55 Testosterone: 40.38

Stopped Xtandi in Dec 2024 as it was impacting my eye sight (blurry vision)

PSA 2025-01-08 :0.74 Testosterone: 49.03

PSA 2025-02-05 :0.90 Testosterone: 57.68

Feb 24 2025 began taking double dose of Orgovyx

PSA 2025-03-12 :1.18 Testosterone: 46.15

***

So doubling the Orgovyx dose did reduce my T but not a lot. I will now probably have a PSMA scan next as I have a clean bone scan and a clean CT scan and at least 3 consecutive rise of PSA so I fit the condition of my hospital for PSMA. I however need to meet with a RO to get the final approval for the PSMA scan.

My MO has asked me to continue taking double doses of Orgovyx for another month to see if it will lose its impact on T or not. I have accepted to do this because I am in no hurry to switch to something else before the PSMA scan.

If the PSMA scan shows spots, then maybe they will receive radiation. But if it shows nothing, then I guess it is a waiting game to see if it stops increasing at some point (due to my T not being fully suppressed) or if it increases non stop, then it is systematic and I'll need either Lupron or Estradiol since Orgovyx does not suppress me fully.

[petabyte in reply to Mascouche]

There are a few drug interactions listed here including St John's Wort that can reduce efficacy. Taking it on an empty stomach increases absorption, not significantly but worth a try.

ema.europa.eu/en/documents/...

[Mascouche in reply to petabyte]

Thanks for the link, petabyte. I've gone through the document and I am not taking anything that is listed as reducing efficacy. Also, I already am taking that drug on an empty stomach, aside for having had a coffee first.

Worked perfectly the very first month and only that month.

I am a creature of habit so timing and everything has not changed. Same routine then as now.

Drug wise, there was a single change, which is that after the first month I added Xtandi to Orgovyx but if it had been Xtandi interfering with it, things should have gotten back to normal since I stopped taking Xtandi in December, so 3 months ago.

[despurato]

Well I got excited for nothing but, I have a light at the end of the tunnel!

[gsun]

probably will not rise. Two years on both meds and only stopping one and being 72 years old is the mix. My friend went on a combo for about 13 months (or more?), stopped both six months ago and had no rise in T as of yet.

[Spinel_Cutter]

Frankly, dropping one and leaving the other does not make a lot of sense to me, I asked ai and this is what the answer was:

"This approach of discontinuing orgovyx while continuing abiraterone for an additional 6 months is somewhat unusual and doesn't fully align with standard treatment protocols. Here's why:

Orgovyx (relugolix) and abiraterone are typically used in combination for advanced prostate cancer treatment14.

The STAMPEDE trial, which is often used as a guideline for treatment duration, recommends 24 months of combined therapy for locally advanced prostate cancer46.

Discontinuing one medication while continuing the other doesn't follow the typical treatment pattern. Usually, both medications are either continued or discontinued together6.

Abiraterone is generally most effective when used in combination with androgen deprivation therapy (ADT) like Orgovyx27.

The decision to stop or continue treatment should be based on individual patient factors, including PSA levels, side effects, and overall response to treatment49.

Given these considerations, it would be advisable for the patient to discuss this decision further with their doctor. They should ask about the rationale behind this approach and whether it's based on specific factors in their case. If there are concerns, seeking a second opinion from another oncologist specializing in prostate cancer might be beneficial.

I added the bolding. It certainly may be appropriate for you, or it's a doc that doesn't have much of a clue and I'm sad to say, there seems to be a fair amount of them. The numbers are references. To access them ask your question at perplexity.ai or one of the other ai's.

[despurato in reply to Spinel_Cutter]

That’s certainly something to ask about? I’m going to the only NCI institution in the state of SC. Surly they have their ducks in line. And if it will help me I have no problem staying on the Orgovyx until the two years is up with the abi and prednisone.

[despurato]

Not really. I’m also getting bcg so I’m going to say that contributes to some of my fatigue but overall I’m doing pretty good.

[despurato]

no I don’t. Thank goodness

[j-o-h-n]

Sorry I can't comment on your inquiry because I dropped out of medical school to become a Chippendale dancer. Give em hell anyway!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[despurato in reply to j-o-h-n]

Oh law, that’s like a bad dream!