What's your experience with Orgovyx (relugolix)?

I had RRP in 2021 PSA went from 11.6 prior to surgery and dropped to 0.37 post surgery. My PSA continued to climb so 6 months after having my prostate removed (PSA up to 0.69) I had 34 rounds of salvage radiation to the prostate bed. PSA rose during radiation treatments to 1.29. PET/CT scan did not show anything. I switched medical teams and finally got a Urological Oncologist. We decided to wait on any ADT and keep monitoring everything. My 3rd PET/CT scan (PSA up to 6.56) did show a tumor in my chest. My Urological Oncologist hooked me up with an Oncologist that was overseeing a drug trial. The Metacure trial was for guys with Very High Risk Localized and Low Volume Metastatic Prostate Cancer. I was put on Orgovyx along with a second trial drug Erleada. When I started the trial 03/23 my PSA was up to 13.46. One month into the trial PSA dropped to 0.15. I finished 5 rounds of radiation to my chest May 1st.
My PSA has dropped to 0.02 now, PET/CT scan shows no metastasis and other smaller nodules they saw in my lungs (but did not light up on PET/CT) have also reduced in size or are gone. So far the side effects have been manageable. Hot flashes and some fatigue are the side effects most notable. Some minor breast enlargement and mussel loss are going on as well. If I had started ADT before the Metastasis showed up I would not have been eligible to be part of the trial. So for me waiting to start ADT was a good thing. Monday I go in for lab work and to meet with my medical team. Please feel free to contact me if you have any questions. Wishing you all the best,Robert

My first scan didn’t locate any new cancer cells, so we moved on to something called a Choline C-11 pet scan.
( I believe it is a more intense imaging process). As a result, cancer cells were found, and I started a regimen of hormone therapy which I am still on today.
I hope this helps, and I wish you all the best.
Phil

Thank you for the info on Orgovyx, my psa has started to rise after being cancer free for 8 years. One cancer doctor wants to put me on this drug but the urologist who did the surgery wants me to wait until it shows up on a psma pet scan. The first scan didn't show it had spread anywhere. Not sure what to do or who to believe. Any comments would help

Hi,
I have had a good run with Relugolix that lasted for 14 months. My PSA was 1200; within several months it was down to .25. Side effects included muscle and joint stiffness, gynecomastia, but no hot flashes.
In the past several months the PSA number has reached 2.5, so I will be having a Pet scan next month to determine what course of action to take next.
Probably a stronger hormone. I hope this can help you. Good luck, and stay positive.
Best regards,
Phil

I’ve been on Orgovyx for about 2 months. My PSA has become undetectable . The main side effect I’ve experienced is hot flashes a couple of times/day for a few minutes. To me it’s an annoyance but a small price to pay considering the benefits. I hope guys won’t be scared off by the list of possible side effects which, for legal reasons , must be all inclusive. Most men will not experience many of them. Some might. One advantage of Orgovyx over injected hormones is that you can always stop if you are unlucky enough to have bad side effects.

Orgovyx cured my metastatic prostate cancer.; took for 2 yrs; clean bill of health 5/10/2023.CT CHEST ABDOMEN PELVIS W CONTRAST

Details
Study Result
Narrative
EXAM: CT CHEST ABDOMEN PELVIS W CONTRAST

INDICATION: stage 4 prostate cancer, known nodal metastesis, repeat staging, access for treatment response

COMPARISON: Multiple prior CT scans. The most recent is the torso CT from 05/23/2022. Whole body bone scan 01/20/2021

TECHNIQUE: CT axial images of the chest, abdomen and pelvis were obtained during intravenous administration of 100 mL Omnipaque 350. Sagittal, coronal and MIP reformatted images were obtained and reviewed.

ORAL CONTRAST: Positive oral contrast was administered.

FINDINGS:

CHEST: Two micronodules which appear calcified (304:139 in the posterior left lower lobe and posterolateral right lower lobe 304:180) are stable and almost certainly incidental. No suspicious pulmonary nodules. An area of scarring in the medial left
lower lobe is stable. Trachea and mainstem bronchi are normal. No consolidations or effusions.

Normal thyroid.

The heart is not enlarged. No pericardial effusion. Nonaneurysmal aorta. Mild coronary artery calcifications.

No mediastinal, hilar or axillary adenopathy.

Normal thoracic esophagus.

ABDOMEN/PELVIS:

The liver is normal in size and morphology containing no suspicious lesions. The gallbladder contains a few small stones which layer dependently. Normal spleen, adrenal glands and pancreas. The left kidney contains a few scattered simple cysts which are
stable. No hydronephrosis.

The bowel is unremarkable with no evidence of obstruction or wall-thickening. Possibly the stump of the appendix is seen on coronal image 60. This is not inflamed.

Pathologic adenopathy in the pelvis and retroperitoneum has not recurred. Left external iliac node measures 7 mm ((303:201) and is stable. No growing lymph nodes are appreciated.

The bladder is unremarkable. The prostate is not well assessed but appears grossly normal.

No ascites. No peritoneal nodules.

Small fat-containing right inguinal hernia. A knuckle of small bowel protrudes into this but it is not inflamed.

Hepatic veins and portal venous system are patent. Focal moderate stenosis of the proximal 2 cm of the SMA secondary noncalcified atherosclerotic plaque (602:73). This has progressed. The lumen in this area has narrowed from 7 mm to 4 mm since 2021

MUSCULOSKELETAL: Left total hip arthroplasty prosthesis is intact. A subcentimeter sclerotic focus in the right lateral sixth rib is stable and did not demonstrate uptake on whole body bone scan. Most likely this is a small bone island. No suspicious
osseous lesions.

IMPRESSION: Stable exam. No pathologically enlarged pelvic or retroperitoneal lymph nodes. No convincing evidence of osseous metastatic disease noting a whole body bone scan is pending.

Moderate stenosis of the proximal SMA secondary to noncalcified atherosclerotic plaque. This has progressed relative to 2021. Since that time the lumen in this segment has narrowed from 7 mm to 4 mm.
Details
Study Result
Narrative
EXAM: NM BONE WHOLE BODY

INDICATION: stage 4 prostate cancer, known nodal metastesis, repeat staging, access for treatment response STUDY NOTES: 20.6 mCi MDP in RAC

COMPARISON: CT chest and abdomen/pelvis 5/10/2023. Bone scan 1/20/2021

RADIOPHARMACEUTICAL: 20.6 mCi of Tc99m MDP IV.

TECHNIQUE: Following radiotracer administration, standard whole body bone scintigraphy was performed.

FINDINGS:

There are no uptake abnormalities suspicious for osseous metastatic disease.

Periarticular uptake in the shoulders, wrists and left ankle is typical in appearance and location for degenerative change. Additional focal uptake in the posterior thoracic and lumbar spine is favored to reflect degenerative change.

Renal, bladder and soft tissue uptake are physiologic

IMPRESSION:

No specific evidence of osseous metastatic disease.

@mothergoose1, don't forget that not everyone experiences all the side effects listed as possible side effects. Have you talked to your oncologist about potential alternatives to Orgovyx (relugolix)? What treatments for prostate cancer have you had thus far?

I have decided not to take orgovyx I think the bad side effects far outweigh the advantages… I’m hoping to just get radiation treatment….

I have been subscribed Orgovyx for my prostate cancer but I have heard some bad side effects of others using it… Has anyone else encountered bad side affects with this new medication???

I'm in my 8 month, the flushes have mostly disappeared. Maybe once a week at night I'll notice one. I've developed a small "Lupron Belly" but keeping it in check with diet and exercise.

The only other thing is the fact that my testicles have shrunk up to nothing. I'm setting up a full blood panel to see what else it may be doing, just have gotten to it yet.

It's expensive but luckily my insurance covers it.