What's your experience with Orgovyx (relugolix)?

Appreciate your post; I begin Orgovyx Friday, and radiation Jan 13. I was hoping to find some Pt experiences with Orgovyx, so thank you and here's hoping your recovery continues to be relatively tolerable.

Layperson reponse: Both injectable Eligard or oral Orgovyx are recommended therapies. Insurance coverage may be more comprehensive for Eligard (Medicare Part B and Medicare Supp, if applicable) vs Orgovyx Tier 5 Medicare Part D coverage. I am beginning 4 mos of Orgovyx Friday, with 38 radiation txs beginning Jan 13. Orgovix has a slightly better cardiac risk profile to Eligard (think 3% vs 6%, not positive). Obviously, choice is yours to make with your MDs. Good luck.

general

Im due to start hormone injections soon since the PSA level is now 5 after surgery 4 years ago
The cancer has spread
Which treatment is suggested
Pills or 3 month or 6 month injections.

As a GmRH antagonist, the cardiac profile of Orgovyx is superior to that of the agonists.
All testosterone lowering drugs, and orchiectomy, can cause cardiac issues.
I am glad you were not on a long term injection of Lupron. That would have been very problematic! At least Orgovyx is quickly cleared.
With a Gleason 9, you do need to be on some type of ADT. Perhaps your solution will be to take estrogen with it, and that may balance the side effects.
Ii think you need to find the best center that specializes in prostate cancer. Mayo in Rochester is top notch if you can get there.
You need to work with a team that knows how to handle your complex situation.
Best of luck to you!

NOT HERE---can't even message doctor----IT glitz---and the doctors here use a different EPIC than their counterparts in the same Health Care System of a major University in a larger town
AND CAN NOT SEE EACH OTHERS FILES (yes, even with Care Everywhere) and I was the first one to try to do some surgeries in one and some in the other and it just was not possible...even med auths for PSMA PET CT could not cross over and we all waited weeks until someone figured that out----staff swears that is not possible but INS would not grant auth in other location...and it never helps to get a contraindication for an anti-biotic for a Fusion Biopsy "this will kill you, who wrote this" - Pharmacist---and then when you switch to the big big big UNIVERSITY practice--they do the same....and same Pharmacy, diff Pharmacist on duty stops it at the window again...slows down the appt////then they have wait 8 days to tell you have the worst results possible (after I called them in AM and they called back at 445.....no rush for them....(I heard prostate cancer Gleason 9's does not wait)

Also... can NOT find how to tell FDA

Glad it worked for you...I could not think or work or make decisions and after trying every other day for a week and a half...intense heart pounding (with aneurysm that is Russian Roulette) so it is not for everyone---their own paperwork inside the package lists 9 men dying out of 332 ~ from heart attacks

My husband has been on Orgovyx for a year, with no side effects. Prior to that time, he had 4 monthly degarelix injections.
I see the advantage of Orgovyx as being a GnRH antagonist and fewer deleterious cardiac effects associated with the agonists, like Lupron.
Most of the side effects some men experience are related to the low testosterone, and would be present no matter the method for lowering T.
The other advantage is for those men who might not be on ADT forever. Rapid testosterone response upon discontinuing Orgovyx makes that a more attractive alternative.
Lastly, the convenience of taking a pill at home vs the monthly injections of the only other currently available antagonist made this an attractive option for us.

@tnola123th, you have a lot of questions and they deserve answers. I hope you saw the response from @web265 who provided some great thoughts and his experience.

Have you considered talking with an oncology social worker? They can be great at helping patients to get answers. You can learn more about the wide range of services they offer in this blog post.
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Most large cancer centers include oncology social work as part of the cancer care team.

Is Lupron likely to have the same effect on your heart? That was the "go-to" before orgovyx I believe. (my father took it for years)

Although it is considered to be true that you should take a two pronged approach to treating this, ADT + Radiation or more advanced treatments, I know of a several patients that had good outcomes just getting radiation. I don't know that they had or didn't have perineural invasion or what size their prostate was though. Even my RO told me at the beginning of this treatment cycle that ADT + Radiation only has a 3%-5% better outcome than those who just take radiation alone.

This may be based on my p size and gleason score of 7 (8 of 12 cores) but I didn't confirm those as a variables in the stat.

The big surgeon may be saying that surgery isn't the best option because with the perineural invasion, radiation may be inevitable at this point. This is what happened to me, it just wasn't known going into the surgery.

If your "prostate size" is in mm of total prostate volume, as a layman mind you, that does sound like a lot to me, that may be where the comment came from in the second opinion.

At the age most of us get this, there are likely to be more folks here in the same or similar boat that you are in cardio wise. Hopefully someone will be able to give you better information than I have. There is also a LOT of information available on this forum and information linked on this on it in various posts that you can look up.

Best of Luck to you!