My husband is 67, Gleason 8, Stage 4B low volumn. He also has IBS-D, he's been on Zytiga since 10/24 and Eligard 3 month shot since 11/24. The second 3-month Eligard shot was on Jan 27, 2025, he didn't react too bad after the first shot, however on the second shot it knocked him on his butt for a whole month, it made his IBS-D really bad (and still is). His PSA was initally 85.9 in Oct 2024 and within 2 weeks went down to 7.41 as of Jan 27, 2025 it's .04. So everything is working as it should. The OC reduced his Zytiga from 1,000mg to 500mg in December to see if that would help with his SE, it really didn't make much of a difference. He's on low dose prednisone 5mg once a day.
My question is would changing him from the Eligard 3 month shot to the daily dose of Orgovyx help him with his SE? I've been watching and reading your posts since October and it seems that this change might help him? I would like to know your thoughts, especially from Tall_Allen (he seems extra knowledgable on the subject).
When I asked the OC about triple theraphy he said that would be years down the road. I don't know whatelse we can do to help him I'd appreciate any and all comments.
Thank you.......
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charper77
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Thank you, I keep reading that Orgovyx is not as hard on your system as Eligard, I wanted to get some personal experiences before I ask the doctor to change it.
Eligard standard 3 month shots. Around a year or so.
Firmagaon: 1 shot only. Initial standard dose. I couldn't sleep for 3 nights after that. I went to Orgovyx.
Orgovyx: I use it with BAT. Been doing that for years now.
Eligard was ok for me. Firmagon horrible. Orgovyx the best. Also the best in trials and studies. And the fastest acting. And the fastest and most complete T recovery.
Thank you for your response, that's good news for you. I asked the OC last time about BAT and they don't subscribe to using that. He uses Bronson in Kalamazoo, MI
Oct 21, 2024 he started 1,000mg Zytiga with 5mg prent, on Nov 4th he received his first 3 month Eligard shot. In Dec the OC reduced his Zytiga to 500mg because he's IBS-D got so bad that seemed to help a little. Then on Jan 27, 2025 he received his second Eligard shot and that knocked him on his butt for an entire month, IBS really really bad, hot flashes, brain fog, and just plain felt awful. The good news is that his PSA dropped quickly from 85.9 to .004 as of Jan. 27th. He seems to be feeling a little better this past week. The first 2 weeks on Zytiga he didn't feel too bad it's when the Eligard was added that it quickly changed and really bad once he got that second Eligard shot. He's due for his third shot in April that's why I'm trying to find out what would have less SE I've read alot about Orgovy and wanted to get some opinions on it.
As for Firmagon being the worst, I know about this. At least Firmagon and Orgovyx are both GnRH antagonists - unlike Eligard/Lupron, which is a GnRH agonist. The antagonists seem to have much better side effects both immediate in terms of hot flashes, I never get them and I never got them, and also in terms of long-term cardiovascular risk. Notice I said "seem".
But as for Firmagon being the worst, and also from my own experience, I'm pretty sure the only reason for this is due to nurse injection incompetence. The injection is 20 steps and it's slightly tricky and you need to know what you're doing. And if the nurse just learned from another nurse from a casual conversation in the hall 5 minutes before, you are at rest for a horrible experience for the next 5 days
I begged them to let me self inject. I even offered to get certified. No use. The nurse injecting me started to inject in my rear. I stopped her. She then disappeared for a bit to determine that the injection is not in the rear.
Maybe if you had a skilled nurse and she was always available for every injection... or better if we can self inject.
There are people on the forum here, hardly enough it seems mostly from Australia, that do their own injections. Your circumstances sounds horrible. It's a scandal. Makes you think what about the things that we can't see but are tricky? I had Docetaxel infusion where some of the stuff ended up in the flesh around the vein in my arm and it was painful and left a strange brown mark. (I've been able to wrangle an arrangement where a specialist nurse comes to my home every 28 days. Also a huge time and expense saver in terms of going to a clinic or hospital.)
The nurse was nice. Good facility. Very accommodating. I just think it was a simple mistake. My MO told me that she wished she could let me self inject but it was against hospital rules.
I think our society is way too sue happy. So, some dumb asses do some stupid shit? Don't punish them, put an asinine rule in place that punishes everyone. Hey, warning: contents hot when heated. Warning: our coffee can be hot. Be careful and we'll make sure to install crap to reduce our temperature. Oh, and we're a for-profit company so the judgment will be passed on to the customer as will the costs for new monitoring equipment.
Remember that? Some bozo got burnt by hot coffee and sued because it was hot.
I'd look into orgovyx. If you can get it, good. It's better for many reasons. But ask your MO what they think in your particular situation.
I just stopped the Eligard after 6 months. Like you the second shot knocked me on my butt too. I ended up in the hospital with cellulitis and the ER docs did all kinds of heart tests. I start the Orgovyx next week was supposed to take another shot of Eligard but asked my OC for Orgovyx cause of the better SE on the heart and that the testosterone will come back iff that’s ever an option.
My experience is...when I began ADT in January 2024, my MO offered me either Firmagon (injection) or Orgovyx (pills). She wasn't sure Orgovyx would be covered by insurance (but it was). My preference was to take a pill, vs. an injection. The S.E. when I did my research seemed to favor Orgovyx. So, Orgovyx has been my ADT for a little over a year now. Good luck !!!
I switched to Orgovyx six months ago after a year of Lupron injections. I had hoped for a reduction in side effects but unfortunately haven't noticed any change..
I started treatment January 2022 with Lupron shots once every 30 days. Switched to Orgovyx after about 5 months. I found Orgovyx to have fewer/less intense SE's.
Both drugs specifically induce very low testosterone, which is the driver of the side effects. Therefore noticeable differences in side effects are largely placebo effect. Some report Orgovyx is kinder in this regard, but the action of the two drugs is identical.
Orgovyx is still superior anyway though, if you can get it. Much faster T recovery if stopped (either entirely or as intermittent), and the oral route is far more convenient for most. He does have to remember to take it daily.
How much does he exercise and what kind? Again, the castrate levels of T cause the side effects, not the drug per se. This includes the fatigue of course. Exercise lessens all the side effects of this class of drugs (LHRH) far more effectively than which variety is taken.
Thank you for your response. Yes he does workout, walks 5 miles a day and then in our home gym for 30 mins, so about 1 3/4 to 2 hrs Monday thru Friday and on the weekends just the walks. He drinks lots of water too I read that supposed to help. I've had him workin out for about 12 years now so that's not new for him just a lot harder.
The superiority of Orgovyx re cardiovascular events is controversial even among experts, but one cannot argue with individual results. Certainly it is no worse.
It's great to know he is walking that much and whatever he is doing in the gym. Heart disease is commonly caused or exacerbated by these drugs, and is unfortunately part of the reason for the reputation Pca has of being a disease you 'die with, not from'. Statistically CV disease kills at least 10 times the number of men prostate cancer does annually, approximately 350k vs 35k. Yet so few older people exercise at all that it is almost shocking. This alone is a big reason why the exercise is so critical.
It's hard to maintain the commitment and intensity when your body is so often telling you to nap, but this is what what we contend with, sometimes daily. His established habits are a great blessing, and a earned one.
You 'had him working out for 12 years'. Haha, excellent. Keep it up coach.
Crack that whip.....lol Super glad I convinced him to start working out with me years ago. I wish they could also find a cure for IBS-D you would think they'd figure out what causes it and how to stop or at least slow it down and these adt drugs make it worse (if that's even possible). I'm trying to help find him an alternative if at least the IBS could go back the way it was that would be easier on him. Thanks for your reply I appreciate it.
"... much faster recovery if stopped" for Orgovyx can also be a downside. First of all why would you want to stop? Don't forget we are on the advanced prostate cancer form here and that means we all have metastatic prostate cancer. And the idea of holidays is generally a bad idea.
But secondly the instructions for the drug say you have to take it exactly the same time every day. If you miss a day or two or three, you are putting yourself at risk for a testosterone spike which might feed a little bit of enthusiasm for activity among congregation of your cancer cells. Which are mostly asleep.
Sticking to a regime of taking a pill every day is written up as compliance. It's a huge issue with older people of course taking say a dozen meds on different schedules and combinations. But are we sure that if there's a little bit of travel or someone sick or something weird happens that we can guarantee access to our drug? Every single time?
Orgovyx pills: Taking them every day within the course of that day is sufficient, but naturally making it a habit to take it at the same time each day is helpful. Those who might forget shouldn’t take it unless they have someone to save them (usually a wife). Otherwise no not a smart option.
I forget a few things from day to day but have never forgotten the important pills, ever. Travel, ‘something weird’ etc are definitely chances I would be willing to plan for and take. Some of us are not wired for that, or perhaps just not anymore.
The subject has come up before, but it should be clear by now: We are not all required to be metastatic to carry a ‘membership card’. The forum is for advanced prostate cancer, not metastatic prostate cancer. Discussion is mostly around metastasis and its processes, but by no means exclusively.
Some members came here diagnosed with 4+5, SVI, positive lymph nodes, high PSA. All markers for advanced disease. They embark on treatment that may or may not give them a durable remission for years, but throughout they surely have ‘advanced’ disease. Just as surely they have little in common with those in AS or low risk groups.
The most prominent member of this forum fits this general description. So do I. Despite an ongoing 4 year remission, you better believe I either have or had advanced prostate cancer!
Thankfully times change, however slowly. Despite the always onerous challenges of fighting Pca , a new contingent of successfully combination treated, high risk, oligometastatic etc patients continues to emerge, mostly due to relatively recent advances in radiology.
Finally, intermittent ADT has gained much favor among many well respected oncologists in the field. As with metastasis directed therapy (‘whack a mole’) It has been proven neither to work nor to fail, and some have had documented successes.
These experts feel it’s entirely possible that periods of palpable SE relief via T recovery (especially with Orgovyx) can be achieved through intermittent ADT without simultaneously fast tracking the disease. They have seen it!
Some great minds here do not believe in this, yet admit they can’t actually know any more than what current data shows.
As for the definition of metastatic, according to what I just checked, just a single positive lymph node neans one is metastatic. Not on the same scale of course.
And on the topic of intermittent, I understand is that the current state of "craft-based" casual, seat-of-the-pants, intermittent, which we have had until now, has no evidence that it works at all, except possibly accidentally.
However there seems to be some serious work, and I think a reference was posted here recently, putting to work "mathematical oncology" based on evolutionary models. And the idea is to disrupt the extreme selection for super-survivor cancer cells that inevitably grab us by the throat and we call it resistance. And among the innovations is testing linked to modeling. Nasty cancer cells no longer have the evolutionary advantage! Now you have intermittent that is science-based. Let's hope for more progress!
He is very good about taking his meds, the Zytiga has to be taken the same time everyday and he's had no problem doing that he knows how important all of this is. I just wish I could get him to join this group directly, however he gets really depressed when faced with all these facts and experiences so he leaves it up to me to learn what I can. I would/could/can and do anything to make his life better and longer he's my world.
There are reduced cardiovascular side effects as well.
In this trial involving men with advanced prostate cancer, relugolix achieved rapid, sustained suppression of testosterone levels that was superior to that with leuprolide, with a 54% lower risk of major adverse cardiovascular events.
One user on this forum reported that they needed to change from Orgovyx to injections due to malabsorption (crohns i think) could this be a risk with IBS-D? If you do change you may want to monitor T levels especially in the beginning. Orgovyx has slightly better absorption on an empty stomach (not clinically significant).
Thanks for the response, I think he's also had that problem all along, he does take lots of extra vitamins. His T levels on Zytiga instantly dropped to:
<2.5Low
They never checked it before the Zytiga, this number was him only on this for 2 weeks, they checked it the same day they gave him his first Eligard shot. I think he had low T to start with but I could be wrong and we'll never no since they didn't test him in the beginning.
I was the same, they didn't test me either 😡 and things were so overwhelming at the time that I didn't think of it. So I have no idea what T recovery might look like.
Do patients change from Eligard to Orgovyx because of Side Effects?
AI - ChatGPT said:
Yes, some patients switch from Eligard (leuprolide) to Orgovyx (relugolix) due to side effects. Both medications are used to treat advanced prostate cancer by reducing testosterone levels, but they work differently:
Eligard is a GnRH agonist, given as an injection, which initially causes a testosterone surge before suppression.
Orgovyx is a GnRH antagonist, taken orally, which lowers testosterone more quickly and without the initial surge.
Common Reasons for Switching:
Cardiovascular Concerns – Orgovyx may have a lower risk of cardiovascular events compared to Eligard, which has been associated with a higher risk of heart-related issues.
Injection Site Reactions – Eligard is an injection, and some patients experience pain, swelling, or irritation at the injection site.
Testosterone Flare – Eligard causes an initial spike in testosterone, which can temporarily worsen symptoms like bone pain or urinary problems. Orgovyx does not cause this surge.
Convenience & Preference – Orgovyx is taken as a daily pill, whereas Eligard is an injection that lasts for months.
Other Side Effects – Both drugs can cause fatigue, hot flashes, and muscle loss, but some patients may tolerate one better than the other.
Would you like more details on the differences or specific side effects?
Pca is like a jigsaw puzzle you can never can complete. Missing pieces here and there. Give my regards to you dear Husband and tell he hit the jackpot when he married you. Take care!!!
My husband is on both Eligard and Zytiga with Prednisone. The side effects were tough, but our Oncologist told us not to change anything that is working well. To manage the side effects, he is taking Effexor 150 mg. It is being used off label to manage hot flashes but has the extra benefit of keeping depression (from the diagnosis and side effects of ADT) away. This, in combination with exercise daily really helps. I make him speed walk with me up hills and that cardio is so beneficial to fighting this disease. Best of luck managing it all. If he switches over, please let us know if it made a big difference.
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Eligard - delay by 1-2 months?
Shortness of breath on Lupron; switch back to firmagon?
My Dad
2 years post Taxotere and ADT, PSA increased from .3 to .4 to .8 over the course of six months. Next best step?
PSA stabilizing to 99.30 (from 3103), should we seek additional treatment or wait?
