Orgovyx vs. Eligard: Interested in... - Advanced Prostate...

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Orgovyx vs. Eligard

Vman1 profile image
90 Replies

Interested in opinions of Orgovyx vs. Eligard.

Has anyone switched from Eligard/Lupron to Orgovyx or vice versa and why? What are the advantages of Orgovyx?

Are side effects pretty much the same?

My RO told me that there are not enough studies of long term Orgovyx. Has anyone been on Orgovyx for more than a year?

Can Orgovyx be used with abi/pred?

Thanks

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Vman1
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90 Replies
JohnInTheMiddle profile image
JohnInTheMiddle

1. Yes Abi/Pred can likely be used with Orgovyx GnRH antagonist ADT.

2. Eligard is a GnRH agonist ADT. There is some clinical evidence and reporting by users that a GnRH antagonist will deliver a better cardiovascular risk profile, and likely fewer hot flashes etc. (This is an advantage of any GnRH antagonist, over Lupron or Eligard or whatever.)

3. For sure Orgovyx is very new. And aside from the different type of GnRH engagement, it's a pill and not an injection. Just taking a pill is so much easier than having to an arrange an injection!

4. From my perspective of being on an injectable GnRH antagonist for a few years, Orgovyx is very interesting. However, I also have a concern about the importance of taking the daily pill at the same time every day, and never missing a day. Life is strange, and it's not unheard of that due to circumstances one might forget or not be able to take a pill. And Orgovyx is metabolized very quickly. And forgetting to take a pill might lead to a little testosterone spike. And no one knows what the effect of such an event might be. Not to be paranoid, but it's something to try and avoid. Consider the extreme case of being arrested and incarcerated for a day or two. It's quite likely one would end up with a testosterone spike. Okay that's an extreme example, but you get my point.

Vman1 profile image
Vman1 in reply toJohnInTheMiddle

Thank you for that thorough reply. All the best.

Vman1 profile image
Vman1 in reply toJohnInTheMiddle

Of course, abi/pred are pills also. So adding another pill to the daily routine may not be that big an issue.

petabyte profile image
petabyte in reply toVman1

Personally I take all of them (Abi/Pred and Orgovyx) at 06:30.

Prednisone should be taken as early as possible to mimic cortisol. Abiraterone should be taken without food. Orgovyx can be taken with or without food. Stomach issues with prednisone should not be an issue with enteric coating in most cases, but taking it with sufficient water to promote stomach emptying may help.

I use day labelled pill containers plus medication alerts in Apple Health to reduce the possibility of missing a dose.

petabyte profile image
petabyte in reply toJohnInTheMiddle

I think the missed pill thing is overblown. It takes a long time for testosterone to start to recover even on Orgovyx and the depot formulations of injectables are not without their own issues regarding steady drug delivery.

(that being said, I do try very hard to never miss a dose)

Tommyj2 profile image
Tommyj2 in reply toJohnInTheMiddle

How much does a month of Orgovyx cost you?……this would be a likely impediment to my taking it…..no part B coverage.

MateoBeach profile image
MateoBeach in reply toJohnInTheMiddle

Once established at castrate testosteone levels for awhile, it just does not recover that quickly. Missing a day or even two could not result in significant T spike. Just not in the physiology as so manny have found when going onto an ADT vacation. On the otherhand, LHRH agonists such as Lupron etc. have been shown to have occasional micro-spikes. In the big picture I think these are not where our concerns should be.

I had severe local reaction to leuprolide injection, but did just fine on Firmagon and now on Orgovyx. Lower cardiovascular risk profile also. Plan to stay our of jail just the same.

GuitarMaker1978 profile image
GuitarMaker1978 in reply toJohnInTheMiddle

I was off ORGOVYX for a week and it did not cause a testosterone that resulted in losing resistance.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toGuitarMaker1978

That's great. May I ask if you had T tested at the end of the week? As for developing resistance, it probably wouldn't happen immediately, it would just be a little step towards that. I'd rather avoid those little steps. Also people respond differently, which was the point of the whole business of a "distribution around the mean". A few days off might be fine for some people and not for others. Not ahead of time one doesn't know.

Havanablues profile image
Havanablues

I am starting bicalutamide on Sunday for 1st day of treatment, then I opted for the Orgovyx after the bicalultamide. Any advice fellas? Guess its my turn to ride the lightning guys. Wish me luck.

ulfhbg profile image
ulfhbg in reply toHavanablues

Hi !

Normally you use Bicalutamide as a ’safety net’ to not have a Testosterone spike when you start having Lupron, Eligard ( e.g. the agonist ADTs). Orgovyx and Firmagon are antagonist ADT and they don’t cause Testosterone levels to spike but starts reducing T-levels rapidly compared to agonist ADTs. So, if you’re going for Orgovyx (or Firmagon) then Bicalutamide is perhaps not useful for you to start with. But perhaps you should check with your doctor for his advice.

tarzan11 profile image
tarzan11

All the best

janebob99 profile image
janebob99

There was a study that showed taking Orgovyx without food doubled the absorption. I made the switch from with food to no food, and it made a big difference in PSA and T levels.

nicecity profile image
nicecity in reply tojanebob99

Would you please point me to the study done of Orgovyx on empty stomach.?

I have been taking Orgovyx for last three years with food and T was below 20. and now (last month) it is 51.

My MO said there may be absorption problem.

Thanks in advance

janebob99 profile image
janebob99 in reply tonicecity

I'm sorry, but I lost the reference...

No food worked for me...N=1.

Mgtd profile image
Mgtd in reply tojanebob99

Bob see my post below. I must have screwed up. I was trying to reach you.

Fuzzman77 profile image
Fuzzman77 in reply tonicecity

No food makes a big difference for me with aberatatone. I take it after I sleep. I still got to get up every two hours to hit the John. Just the way it is now, but it makes taking it easy for me. Ever since I went to India and did the APAC treatment it now works for me. It actually quit working after a couple of months back then. Lucky it works again for me, been about 7 years.

Fuzzman77 profile image
Fuzzman77 in reply toFuzzman77

Been 10 1/2 years and I feel better than I have in a long time. My PSA was 212 when diagnosed and it was down to .35 last time I went in.

Mgtd profile image
Mgtd in reply tonicecity

Bob could you expand on how the T and PSA changed.

Also has the estrogen group sent any news letters. If so I have nor received them. Thanks

janebob99 profile image
janebob99 in reply toMgtd

Since I can't find the study on Food/No Food for Orgovyx, I can't comment on changes in PSA and T. I can say that my T decreased by about 50% when I switched to "No Food" with Orgovyx. PSA was dropping the whole time.

I haven't sent out any "official" Estradiol newsletters to the email group yet. Been swamped with other projects. I did send out a group email about the recent ASCO-GU presentation about tE2 + ARPI combo. Did you get that one?

Mgtd profile image
Mgtd in reply tojanebob99

Bob I want to say yes but not sure where I read it. Interesting input on no food.

Thanks

wilcoxsaw profile image
wilcoxsaw in reply tojanebob99

Study please, thanks.

janebob99 profile image
janebob99 in reply towilcoxsaw

I can't remember the study. You might search Google Scholar for "Orgovyx" and "food".

wilcoxsaw profile image
wilcoxsaw in reply tojanebob99

Found nothing except multiple results stating food or no food. I'd be very interested if you can find that study because, if it does work better without food, it would be valuable information to have. I have spoken to the manufacturer as well as the oncologist there was never any mention of increased efficacy without food. In my case it lowered my T to 3 taken with food.

janebob99 profile image
janebob99 in reply towilcoxsaw

This is what ChatGPT says:

ChatGPT said:

Yes, Orgovyx (relugolix) should be taken without food. It is recommended to take it at least 1 hour before or 2 hours after a meal to ensure proper absorption. Be sure to take it at the same time each day with a glass of water.

If you have any concerns or specific dietary restrictions, consult your doctor or pharmacist.

wilcoxsaw profile image
wilcoxsaw in reply tojanebob99

Not familiar with the credentials Chat GPT possesses, however their information contradicts the dosing instructions given by the Orgovyx manufacturer and oncologists . The drug manufacturer and the oncologists all state with or without food, and nothing stating an hour before or 2 hours after food. In the event you find a credible study citing evidence please let us all know, it would be great information to have if indeed it is correct. Thank you for your help.

Slick714 profile image
Slick714 in reply tojanebob99

Chat GPT be smokin crack

j-o-h-n profile image
j-o-h-n in reply tojanebob99

My A I can beat your A I.

Good Luck, Good Health and Good Humor.

j-o-h-n

Jvaughan0 profile image
Jvaughan0 in reply tojanebob99

Using AI as a potential source is concerning, at least, to me. It is easy to buy into, but dangerous to depend on. AI will be the first to tell you it is prone to "hallucinations".

petabyte profile image
petabyte in reply tojanebob99

"at least 1 hour before or 2 hours after a meal" 🤔

This sounds like Abiraterone dosing instructions.

For Orgovyx, this is from the FDA (found with chatgpt 😉 )

accessdata.fda.gov/drugsatf...

Effect of Food

No clinically meaningful differences in the pharmacokinetics of relugolix were observed following consumption of a high-calorie, high-fat meal (approximately 800 to 1000 calories with 500, 220, and 124 from fat, carbohydrate, and protein, respectively).

dhccpa profile image
dhccpa

I've been on Lupron only for 6.5 years. I get them quarterly. No big deal. I have no underlying co-morbidities. I'm not inclined to change anytime soon.

But some like a daily pill and say that if one is ever able to stop hormone therapy, T returns much faster after Orgovyx than after Eligard or Lupron. Also Orgovyx supposedly is easier on heart patients in some cases, supposedly. But Medicare coverage has been better for injectables than for brand name cancer drugs in pill form

Ollie366 profile image
Ollie366

I just finished taking Orgovyx for 10.5 months. I was concerned about missing a pill or taking it at a different time. Talked to the docs about this and was told it's not an issue to miss as many as 3 days in a row . The half-life is 25 hours so it's still in your system for a while. And, as Petabyte mentioned, the time for your T to recover once you've been taking it for a few weeks is months, so a T spike is very unlikely. I posted my experience with the SE on a similar question a few days ago.

A big advantage it has over Lupron is the fast suppression of T, so it's effective much more quickly than Lupron and the recovery after stopping it is months faster. The study on the Orgovyx site shows 55% recovered to normal levels in 90 days compared to 6% (or was it 3%? - still have a bit of brain fog!) for Lupron.

Not to say that my time with Orgovyx was easy, but I think it's the lesser of two evils. Best of luck

JohnInTheMiddle profile image
JohnInTheMiddle in reply toOllie366

Re: "Talked to the docs about this and was told it's not an issue to miss as many as 3 days in a row."

Please see the ChatGPT analysis below. It's so easy for doctors to say "it's not an issue". My doctor thought not doing PSA tests "was not an issue".

Here's ChatGPT on all this, below: healthunlocked.com/advanced...

Ollie366 profile image
Ollie366 in reply toJohnInTheMiddle

The ChatGPT answer about **Testosterone Recovery Is Variable, Not Uniform**

- While studies suggest testosterone remains suppressed for **weeks** after stopping Relugolix, this is an **average**, not a rule.

is just plain wrong. Take a look at the data Orgovyx publishes and it's very clear T is suppressed for many weeks after stopping. I believe actual data over a ChatGPT analysis!

Furthermore, I believe what my extremely experienced doctors (Boston area) say about a drug based on their wealth of experience - certainly over an AI response.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toOllie366

Ollie, I respect your familiarity with data published by the manufacturers or distributors of Orgovyx. Do you have a reference please?

It's not clear that the AI answer is wrong - in fact the answer could be compatible with what you are saying.

The AI is only suggesting that the "suppression for weeks" is a statistical average. That's not wrong.

This is important because it's likely that not everybody responds the same "average" way. And going in, one does not know what one's own position on a distribution is. (And we don't even know if the distribution itself is wide or narrow.)

The patient literature from the distributor or manufacturer says quite clearly take the pill at the same time every day. And so we can ask why is this emphasized so strongly?

The point here is prudence. There's probably no harm in trying to take the pill at the same time every day and to never miss a day. And there's the possibility that this regime discipline could be important, even if only for a subgroup.

We all know that resistance and progression shows up eventually. Who's to say that a casual approach to drug regime compliance might not be in part responsible for undesirable outcomes?

Here's ChatGPT on all this, below: healthunlocked.com/advanced...

Ollie366 profile image
Ollie366 in reply toJohnInTheMiddle

Here you go - say yes to the question that pops up.

orgovyxhcp.com/efficacy#tes...

You can see that while the T recovery is much quicker than Lupron, missing 3 days of Orgovyx isn't significant. Certainly, try to take it as directed, but my docs said it's just not an issue. Hard to imagine missing 3 days while on any significant medication like this, but it's nice to know it's ok.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toOllie366

Thanks for sharing the patient/professional documentation.

If you look closely at the graph, you can see that with faster recovery, given Orgovyx, testosterone would hit 50 ng/dL about day 10. This is the level of testosterone above which we are no longer confident that prostate cancer cells are not being denied testosterone activity signals. (More recent research sets an ideal T target of < 20 ng/dL, which according to the rough linear graph shown would be reached "on average" in four days!"🚨)

Recall that what we in fact are measuring here is the mean of measured testosterone samples from a blood draw in a population of 137 test participants. We are told nothing about the distribution around the mean.

(Let's emphasize that here we are concerned with the effect of testosterone on prostate cancer cells -- not whether or not we have restored somewhat normal levels of testosterone in a man's body.)

The point in the ChatGPT material below is the importance of the distribution around the mean. It's almost assured that there will be a subgroup of men that recover testosterone to 50 ng/dL or 20 ng/dL in a time shorter than the mean shown on the graph.

My point has been that missing an Orgovyx dose is a real risk, even if it's not a huge risk. And the fact that patient drug material emphasizes the importance of taking the drug at the same time every day would seem to underline this.

This level of risk won't matter to some people. But it's worthwhile for people who want to be extra careful to know about this material. We might even note in passing that Orgovyx is still very new in the market, and over time we might learn new things that weren't revealed in trials of a few hundred people. Blythe and broad assurances to everyone about "not worrying" are condescending and even irresponsible. There's a devil in those details.

Here's ChatGPT on all this, below: healthunlocked.com/advanced...

Ollie366 profile image
Ollie366 in reply toJohnInTheMiddle

Keep in mind we're only talking about 3 days so statistically speaking - it's in the noise!

JohnInTheMiddle profile image
JohnInTheMiddle in reply toOllie366

On a separate topic, we enjoy hopefully access to experienced doctors of different kinds that can contribute to our own health. Or the health of our family.

It's also the case that there are systematic failures of the medical system and individual doctors. The 10-year prejudice against PSA testing is a particularly bitter example for many participants in this forum. Experienced doctors actively denied the importance of PSA testing.

j-o-h-n profile image
j-o-h-n in reply toOllie366

My A I can beat your A I.

Good Luck, Good Health and Good Humor.

j-o-h-n

JohnInTheMiddle profile image
JohnInTheMiddle in reply toj-o-h-n

And I see everything twice 🎖️🎖️

j-o-h-n profile image
j-o-h-n in reply toJohnInTheMiddle

My A I can beat your A I.

Good Luck, Good Health and Good Humor.

j-o-h-n

JohnInTheMiddle profile image
JohnInTheMiddle in reply toj-o-h-n

And I see everything twice 🎖️🎖️

j-o-h-n profile image
j-o-h-n in reply toJohnInTheMiddle

🎖️Cause you're looking in the middle....🎖️

Good Luck, Good Health and Good Humor.

j-o-h-n

Havanablues profile image
Havanablues in reply toOllie366

Good to know Ollie, I'm a newbie in the APC life. Could you or anyone else please tell me what I'm to expect when T levels drop. Scared shiteless fellas, mainly because I feel better than I did 20 years ago. Annual blood test is the only reason I found out. Thanks in advance.

Ollie366 profile image
Ollie366 in reply toHavanablues

Every man reacts differently to ADT so what I experienced or others are individual data points but there are consistent side effects of ADT, which are described by many guys - but some have them worse than others I had limited side effects for about 5 or 6 months then they started increasing. These are the ones that bothered me most

- hot flashes every 2 hours, affecting my sleep

- joint pains, especially knees and hands

- fatigue, from the drug itself but also from low hemoglobin

- Loss of libido

I'm just off the Orgovyx after 10.5 months and hoping I'm one that has a fast recovery of testosterone. Time will tell.

Unfortunately, the data is clear that ADT really helps to kill PC cells so it's a necessary part of the treatment plan for high risk (and some intermediate risk) patients, so in my opinion it's worth the side effects looking at the big picture. Good luck with your choice

EchoII profile image
EchoII

I switched to Orgovix about a year ago. I am now on Orgovix and Nubeqa. My side effects are significantly less in all respects except for occasional skin rashes.

duckcalldan profile image
duckcalldan in reply toEchoII

This is my combo as well, from the start 4 months ago. So far it’s been well tolerated.

GuitarMaker1978 profile image
GuitarMaker1978

i’ve been on ORGOVYX for 9 1/2 months along with/prednisone. My MO recommended that I take them during the night when I get up to pee so that way, I never miss a dose. Not only that, it helps reduce side effects during the day. At least that’s what I’m told. When I compare my side effects to those of other men that I know that are on Eligard or LUPRON I believe my side effects are a bit milder.

I was quite ill a couple months ago and had to stop ORGOVYX and Zytiga for a week under Dr supervision and it caused no issues with PSA or testosterone.

there is a recent study published on the time to recover testosterone after discontinuing ORGOVYX and the average was only 3 to 6 months, which was considerably faster than LUPRON. If someone is interested in the link, please let me know and I’ll try and dig it up.

good luck to all that reads this on their journey.

Havanablues profile image
Havanablues in reply toGuitarMaker1978

I wouldn't mind seeing it, I will be starting Orgovyx soon. Any advice whatsoever would be highly appreciated, not doing to well with all this.

GuitarMaker1978 profile image
GuitarMaker1978 in reply toHavanablues

euoncology.europeanurology....

Starstation profile image
Starstation

Cannot speak to comparison between Lupron/Eligard vs Orgovyx

My MO at Emory went into great detail about the difference between agonist vs antagonist.

I opted for Orgovyx for QoL. Was on it for 11 months, then MO recommended vacation. It took 20 months for PSA to go from undetectable to 2.4 at which point I went back on it about four months ago.

I take the pill on empty stomach after workout--usually between 9AM and 9:30. It get engrained in your lifestyle so there is no issue about missing a dose.

Side effects are minimal....mostly hot flashes intermittently, and mostly nocturnal in my case.

Important to get daily exercise to preserve muscle tone. I do 45 minutes on treadmill in my basement....walking at 3.5MPH

Hope this above is helpful.

Good luck

Havanablues profile image
Havanablues in reply toStarstation

Thank you so much for the response and the information. It helped immensely. I will take any advice or suggestions from guys that are walking the walk.

Havanablues profile image
Havanablues in reply toStarstation

Thank you.

Grouser profile image
Grouser

Hi I can not really answer your question but will tell you my experience. The Eligard shots caused me to lose 15 pounds in 6 weeks ( I was not overweight) a very unusual side effect. Doc put me on bicalutamide. It has been without side effects and my PSA is down to .03.

Good luck with your quest! Let us know how your fare.

Positive22 profile image
Positive22 in reply toGrouser

Wow, I’ve gained 10 pounds! I need to lose it in the gym.

Grouser profile image
Grouser in reply toPositive22

it is very unusual to have weight loss with eliguard . Doc said most folks gain. The loss was not viewed as a good thing. Enjoy the gym.

Mgtd profile image
Mgtd in reply toPositive22

I totally support your going to the gym for resistance work but you will also need to do cardio to support the weight loss.

However the real key to weight loss is diet and portion control.

Havanablues profile image
Havanablues in reply toGrouser

Can someone just stay on bicalutamide? Thank you.

Havanablues profile image
Havanablues in reply toGrouser

Wow , from bicalutamide that's great, can someone just stay on bicalutamide?

Havanablues profile image
Havanablues in reply toGrouser

I definitely will let you know.

wilcoxsaw profile image
wilcoxsaw

Would like to see the study cited above regarding Orgovyx absorption food vs no food. Drug mfg dosing instructions state can be taken with or without food.

I've been on all 3 at different times, lupron, firmagon, Orgovyx. Orgovyx is a no brainer if cost is not an issue. No injection site reaction, no having to schedule injections, lower cardiac toxicity vs lupron, faster T recovery.

Jazzman2023 profile image
Jazzman2023

I've been on Orgovyx for 13 months now. Yes, as a previous poster said, you have to be disciplined...But I've got a good routine down...Erleada (Apalutamide) at 7 AM, Orgovyx at 9 AM.....would love to see the study on taking Orgovyx on an empty stomach. Good luck to you !

rick8637 profile image
rick8637

My experience with orgovix after 2 yrs with both xtandi and later with nubeqa was generally good . Taken with food the side effects were moderate. Mo suggested eligard because T levels were remaining about 30. I really dont love the injections and after 5 months on eligard my T levels are still about 30!!. I am concerned about high BP that seems to coincide after starting eligard ? Not totally sure about that relationship to BP but I might ask Mo to go back to Orgovix if it becomes a problem .

GGGG4 profile image
GGGG4

On Orgovyx 2 1/2 years. Only side effect is occasional hot flash which is just a minor inconvenience. Some hair loss. PSA zero for the entire 2 1/2 years. Scans that indicated Stage 4 is now clear. Nothing else with the Orgovyx and don't want to stop because cancer might come back if I do.

Godsheal profile image
Godsheal

hi VanMan, what would you like to know exactly?

Vman1 profile image
Vman1 in reply toGodsheal

Thank you.

1. If it’s safe to switch to Orgovyx from Eligard. I’ve had one 6month injection and due for another in April

2. Can I take Orgovyx with Abi/pred? My doc wants me on 2 years ADT + Zytiga (N1M0)

3. Can Orgovyx be taken safely and effectively for more than one year? My RO was concerned about paucity of data beyond one year.

4. Although no preexisting cardiac concerns, I understand that Orgovyx is the better choice to mitigate overall cardiac side effects. I’m interested in knowing if anyone has experienced cardiac SE’s with either Eligard or Orgovyx.

The responses have been great. This is a very knowledgeable and reassuring group and much appreciated. God bless.

NecessarilySo profile image
NecessarilySo

I stopped Orgovyx after a short timedue to heart problems, long QT I believe. I had no side effects but taking the pill I sometimes forgot. Quarterly injections are hard to forget.

Vman1 profile image
Vman1 in reply toNecessarilySo

Thank you. Did you have or know that you had long QT before starting Orgovyx or did the Orgovyx cause this?

NecessarilySo profile image
NecessarilySo in reply toVman1

I learned of it soon after beginning Orgavyx, so I then switched back to Lupron, because of Orgavyx warnings. I have had a long history of heart disease going back 15 years, and I was using Lupron intermittently when I tried Orgavyx. I was not aware of long QT until I read the Orgavyx warning. It was all done with my Medical Oncologist and Cardiologist.

Vman1 profile image
Vman1 in reply toNecessarilySo

Thank you. Glad you got that worked out. All the best.

SViking profile image
SViking

I'll be on Orgovyx and Nubeqa soon. Concerning the fatigue factor-- is it better to take these pills at night in order to avoid daytime fatigue?

IKNY profile image
IKNY in reply toSViking

Concerning NuBeqa…

I take my dose at 5am, then if I tire, I have a couple hours to sleep it off then I’m good for the day.

I'll take the PM dose at dinner time and don’t seem to be phased by it.

When I fist started on Nubeqa, I slept for 3 hrs after first dose… this diminished daily until after about 2.5 weeks, I only feel a little off balance in the morning… until I get me “sea legs”, then all is good.

Frankly, since being taken off of Dilantin for 44 years… I have an abundance of energy.

I believe, the Dilantin was more of a momentum inhibitor in my life and off of it I seem to have boundless energy… even on Lupron/Nubeqa.

j-o-h-n profile image
j-o-h-n in reply toIKNY

Frankly, since being taken off of Dilantin for 44 years…I have an abundance of energy.

Thanks, that's good to know since you live in NY, you can help me shovel snow....

Good Luck, Good Health and Good Humor.

j-o-h-n

IKNY profile image
IKNY in reply toj-o-h-n

Hahaha… tell me where/when… I’m in the Capital District.

Anyhow, in my early life I farmed and lumberjacked… love physical work!

Love shoveling snow… hahah it’s better than cleaning stalls or the gutter in the barn!

j-o-h-n profile image
j-o-h-n in reply toIKNY

Albany I guess.... I spent a week there one day..... I have solved the "me shoveling snow dilemma" I let my wife do it....Thank you for the offer . Hardest job in the world is being a farmer. I've been a NY city slicker all of my life, but spent a bit of time traveling upstate installing a computer system for banks. Can remember State street and Jacks Restaurant (if it's still there). Stay well and watch your balance.

Note: My Cardiologist had signs all over his office which read "DO NOT SHOVEL SNOW". One time when I had a visit with him I asked if I wanted to "permanently check out" would he help me do so? Well the doctor chastised me for thinking that and went on and on about the thought/suggestion". So I apologized and as I walked out of his office I said to him "BTW doctor all I have to do is Shovel Snow". Case closed.

Good Luck, Good Health and Good Humor.

j-o-h-n

IKNY profile image
IKNY in reply toj-o-h-n

Well, I’m originally from NYC, grew up on the mean streets of Brooklyn in the 60’s .

Dean/Smith St.

I’m both a city mouse/country mouse!

I’m in IT too, have done many Axway bank implementations with BOA, JPM and Banco Popular.

All the best to you!

Sadly, Jacks didn’t survive closed covid.

j-o-h-n profile image
j-o-h-n in reply toIKNY

I'm a south Bronx guy (50's and 60's), now in Queens... I ended up as a consultant for banks (mergers and acquisitions) and my first step was to have the banks replace their chiseled name above their main entrance with Velcro. 🤡

Good Luck, Good Health and Good Humor.

j-o-h-n

Vman1 profile image
Vman1 in reply toj-o-h-n

Brooklyn, Bay Ridge area. Proud Xaverian High Scool grad 1968. Eventually ended up in Iowa…worked in Des Moines lived on a farm in Winterset (think Bridges of Madison County). Retired to north Florida in 2020.

j-o-h-n profile image
j-o-h-n in reply toVman1

Bay Ridge before the bridge....

I remember you guys on the subway in your school (semi military) uniforms (always carrying a large school bag - backpacks not used back in those days) . A good friend and co-worker was a graduate of Xavier (all boys school) and I think he would attend every year at class re-unions. Good ole Jack (John) was a smart son of a bitch. Enjoy Florida and your retirement.

BTW Jack's favorite expression was "After me, you're first".....

Good Luck, Good Health and Good Humor.

j-o-h-n

Biru49 profile image
Biru49

I have taken Orgovyx, Zytega (Abi) and prednisone for 18 months. PSA has dropped continually from 8 to 0.04 two months ago. Bloodwork is every 3 months. At first I had numerous hot flashes but after 3 months or so they decreased to a couple a day and were less intense. My med-oncologist doc put me on a low-fat breakfast to be taken along with the 3 drugs. His opinion is, without food - I try for 7 grams of fat with breakfast - the absorption of the drugs is almost nothing. With higher levels of fat, he believes the meds are absorbed too fast to work properly. So a low-fat breakfast is just right. Goldilocks stuff. I have found a number of low-fat food combinations to be within a gram or so of the target and have never experienced a side-effect of any kind.

My PSA and T scores have done what they are supposed to during this time. My only side effect has been weight gain. I gained 22 pounds in the first 90 days of taking these drugs. And that was with more exercise (weights and walking) and a considerably lower calorie diet. I've lost some of that weight gain over time, but not in the areas where prednisone and Orgovyx put on the pounds - stomach and handles. My doc calls prednisone the 'devil drug.' It helps to keep you alive while it's destroying your body, (lean muscle and bone density come to mind. I guess that's the trade off.

I just started my 9th year of stage four advanced prostate cancer. Prostatectomy at diagnosis, 36 rounds of radiation 3 years later, another 26 rounds 18 months ago along with starting the drugs. I feel very fortunate to still be alive and able to write this response.

Best to all of you warriors!

petabyte profile image
petabyte in reply toBiru49

I presume when he suggested the low fat breakfast the dose of Abiraterone was reduced to 250mg from 1000mg?

This is the low dose protocol where food increases the absorption of Abiraterone by many times.

With the Prednisone it will reduce any stomach issues and with Orgovyx it will not change much. See FDA link above.

Biru49 profile image
Biru49 in reply topetabyte

Correct on all counts. Thanks for the reply.

JohnInTheMiddle profile image
JohnInTheMiddle

Let's ask ChatGPT! 😃

### **Does Missing a Dose of Relugolix (Orgovyx) Matter? A Closer Look**

Relugolix (Orgovyx), originally known as **Tak-385**, is a non-peptide **GnRH antagonist** designed to suppress testosterone without causing an initial flare. The manufacturer and prescribing information emphasize **taking it at the same time every day**, but why? While the general assumption is that **testosterone recovery takes weeks**, could some patients experience a transient testosterone rise after missing a single dose? Could repeated small spikes contribute to progression over time?

Here are five key points to consider:

1. **Pharmacokinetics Suggest Stability, but Not for Everyone**

- Relugolix has a half-life of **25 hours**, meaning levels decline gradually, not instantly.

- However, individual variability in drug metabolism could lead to **faster clearance in some patients**.

- The literature states that missing **3+ days** requires a loading dose, suggesting testosterone recovery is a concern.

2. **Testosterone Recovery Is Variable, Not Uniform**

- While studies suggest testosterone remains suppressed for **weeks** after stopping Relugolix, this is an **average**, not a rule.

- Some patients may have a **faster hormonal response** to declining drug levels.

3. **Could Small Spikes Matter?**

- Even minor **testosterone fluctuations** could provide a survival advantage to resistant prostate cancer cells.

- No direct studies confirm this, but the principle behind **maximizing suppression is well established** in ADT management.

4. **Why the Strict Emphasis on Timing?**

- If occasional missed doses were irrelevant, the manufacturer **would not emphasize strict adherence** in patient materials.

- The **lack of research does not mean the risk is zero**—it simply hasn’t been studied in detail.

5. **Practical Takeaway: Minimize Risk**

- The safest approach is to assume that some patients **might** experience **clinically significant testosterone rebounds** after a missed dose.

- Until we have clear evidence, **taking Relugolix at the same time daily remains the best practice** to avoid unnecessary fluctuations.

### **Conclusion**

Most patients probably do not experience an immediate testosterone spike from a single missed dose, but a **subset of patients might**. If minor fluctuations were truly insignificant, manufacturers wouldn’t emphasize daily consistency so strongly. Given the unpredictability of **androgen deprivation therapy (ADT) resistance**, **avoiding unnecessary fluctuations is the safest course of action.**

JohnInTheMiddle profile image
JohnInTheMiddle in reply toJohnInTheMiddle

There has been a lot of chat on this thread concerning the claim that missing a day of Orgovyx is no big deal. However, I just noticed on another Forum thread the following clarification by Tall_Allen:"Low T is not at all the same thing as castration-level T ([which should be] below 50, ideally below 20 ng/dL)."

From the documentation shared by another person on this thread, it seems that it is possible that the average person on stopping or missing their daily Orgovyx pill could reach the lower limit within 4 days!

And that's the average person - individual situations may vary! The implications are that some people could see testosterone hormone molecules binding to prostate cancer androgen receptors even at less than 4 days.

I welcome any clarifications; but overall this situation doesn't seem to be well explained by doctors.

For me the only implications here are that if one takes Orgovyx, it's important to take the pill at the same time every day. And to plan ahead so that one doesn't miss a dose. I'm very interested in Orgovyx / Relugolix!

VictoryPC profile image
VictoryPC

For me it's Orgovyx by far. Because it's oral and I can control it with natural protocols. I've been using it off and on since 2021.

Vman1 profile image
Vman1 in reply toVictoryPC

👍

Saxophone-time profile image
Saxophone-time

ChatGpt or no ChatGpt if you try something different and you have a positive effect, it shouldn’t matter who, or what, said it. Remember, each and everyone of us are a unique individual and may respond to treatment, diet, exercise, etc… differently. For example. I recently had an injection of Xgeva ( denosumab bisphosfinate) for osteoporosis caused by radiation treatment to sacrum and left hip and a year of ADT ( Orgovyx, aberitarone, prednisone). I was nauseous with vomiting and severe bone and joint pain for one month. My MO’s and Np’s assured me that they have “never” seen nausea and pain more than one week to ten days out after injection! Well that being said, you think I would take Xgeva again? Hell no! I’m now looking into sacralplasty. Anyone heard of it or had it?

petabyte profile image
petabyte

Hi vman1

Would it be true to say you want to change to Orgovyx and are looking for counter arguments for your RO?

If this is the case then you can simply say that you recognize that it is relatively new but would like to change anyway since you prefer oral dosing.

There is no compelling argument either way (except perhaps reduced CVE risk) so it is down to patient preference and a doctor should take that into account.

Of course they can simply refuse, but I think that would be unusual.

Vman1 profile image
Vman1

That makes sense and I will approach it in that manner of personal preference. Thank you

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