What's your experience with Orgovyx (relugolix)?

@web265, I think this is a great idea to start a thread dedicated to Orgovyx. I modified the title a wee bit. I believe that @itterac and @natem have experience with Orgovyx (relugolix) and @kujhawk1978 and @upnort may have something to add.

I started taking Relugolix in late October of 2021.
My PSA number was 1300. Within several weeks it was down to 0.15. Side effects are similar to Lupron.
Myopathy, hot flashes, and gynecomastia. I take Relugolix every morning between 9, and 10am.
Hot flashes are usually over around 12: 00 pm.
I hope this helps.
Phil

It does, thanks. I've been thinking of experimenting with what time I take it. If the hot flashes are worse for the few hours after taking it, I don't want to move to taking it at night.

Took Orgovyx July 1 (3) 2 and 3 and stopped due to confusion and heart pain....(have aneurysm OH Dbl ByPass 5/20) took every other day July 7 to July 18 and night of July 19 woke up to pounding heart----Docs want to change my carvedilol to metropolol and Orgovyx Pharm says heart meds increase side effects----men have died taking it -small % in lit but no number....I don't want to die from the ADT before I even have chance at the Beam
They want me to try every 3rd day BUT it will only take one POUNDING PULSE TOO MANY TO BLOW OUT THE 4.6 ANEURYSM...........now what?????What did they use Orgovyx came along? Why won't anyone talk to me-----????Doctors not readily accessible .....
Gleasons on May12 showed 5 samples at 4+5=9 all L side Prostate size=58 perineural invasion present PSA all2's til Jan 9 then Mar 10 June 16.7----Nuc Med Scan = NoBone PSMA PET CT Clear except at Sternum (pain there for 2 yrs every day after OH)2nd opinion Doc says Prostate has bulge is ready to burst ---something she saw in wording of MRI MAr 3 or Fusion Biopsy?---docs n diff systems and they can't see each other's tests....they also want brachytherapy but I just can't do that and big surgeon in Phily says "too late for surgery" soon it will be too late for the patient....and in will be in lymphs and/or bones and more if it breaks open

wish there were cleared testosterone lowering substances other than Pharma choices

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!

@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.

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.

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

Also... can NOT find how to tell FDA