What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...

Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.

PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.

PSMA PET CT showed nothing.

Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.

Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.

I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for firespooks @firespooks

Has anyone tried the new “Patch” that is out there , that is supposed to be the NEW hormone therapy ? If so how did it work. My Urologist never heard of it.

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It’s actually not that new. It uses estradiol to suppress T. Less side effects due to the fact that it is absorbed thru the skin and does not go thru the liver (doesn’t raise enzymes).
Phil

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Profile picture for brownsf @brownsf

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.

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I'm 1-1/2 months in Orgovyx. I woke up 4 times after midnight feeling a little bit hot in the body and cold legs as if they were a little wet for a couple minutes, and then I would be okey as if nothing happened. My worst experience to date.
I finished my SBRT treatment 18 days ago; my oncologist said that my immediate side effects would probably peak around the third or fourth week. I will see what happens next week. After that I hope things will get better.

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Profile picture for vircet @vircet

I'm 1-1/2 months in Orgovyx. I woke up 4 times after midnight feeling a little bit hot in the body and cold legs as if they were a little wet for a couple minutes, and then I would be okey as if nothing happened. My worst experience to date.
I finished my SBRT treatment 18 days ago; my oncologist said that my immediate side effects would probably peak around the third or fourth week. I will see what happens next week. After that I hope things will get better.

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Yes, I think the insomnia was the most annoying thing, since I am usually a sound sleeper. All good now 3 months post Orgovyx.

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Profile picture for michaelcharles @michaelcharles

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

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@michaelcharles I hope you’re still active or will be notified about this question. My husband had Gleason 9, 4+4, RP but PSA never came down to undetectable. At first PSA follow up it was 1.5. Then 1.9, 2.0, and 2 months later 2.4. Plan for Radiation IBRT at Mayo FL for 38 sessions for prostate bed and lymph nodes. Despite PSMA PET and MRI showing nothing. Assuming micro metastasis. RO also ordered 6 months of Orgovyx. Can you tell about some side effects?
was fatigue horrible doing both rad and ADT at same time?
What about gynemastisis (breast enlargement)?
Husband’s radiation is every day at 1:30 p.m. Should he take ADT in morning to get over hot flashes before driving 1:15 to treatment?
Any other suggestions? He is active doing household chores and fixing things, but should he be walking for exercise? Weights? He’s thin already, and the MiraLAX for radiation prep is already causing issues. Concerned about how to feed him healthy to stave off fatigue, a low gas. Foods. Any suggestions?

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Profile picture for susanocl @susanocl

@michaelcharles I hope you’re still active or will be notified about this question. My husband had Gleason 9, 4+4, RP but PSA never came down to undetectable. At first PSA follow up it was 1.5. Then 1.9, 2.0, and 2 months later 2.4. Plan for Radiation IBRT at Mayo FL for 38 sessions for prostate bed and lymph nodes. Despite PSMA PET and MRI showing nothing. Assuming micro metastasis. RO also ordered 6 months of Orgovyx. Can you tell about some side effects?
was fatigue horrible doing both rad and ADT at same time?
What about gynemastisis (breast enlargement)?
Husband’s radiation is every day at 1:30 p.m. Should he take ADT in morning to get over hot flashes before driving 1:15 to treatment?
Any other suggestions? He is active doing household chores and fixing things, but should he be walking for exercise? Weights? He’s thin already, and the MiraLAX for radiation prep is already causing issues. Concerned about how to feed him healthy to stave off fatigue, a low gas. Foods. Any suggestions?

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@susanocl
1st, sincere best wishes for your husband for successful treatment.
I was 72/73 when I took ADT Orgovyx from Jan to June 2023 with IMRT radiation Mar to April within that time.
Salvage Radiation Treatment (SRT) was not pleasant, however it was not arduous either.
Everyone's experience is different and similar, but we all complete treatment and recover from SRT.
Radiation prep, mostly full bladder and mostly empty rectum, are a challenge and every man has to find what works for him.
I took my Orgovyx in the morning because that is my pattern for medication. I had mild heat flashes and did not find them occurring related to the timing of my ADT.
My primary side effect (SE) was about a 10 - 15% reduction in energy.
I think that it was an extremely important part of my recovery to exercise.
I have always been a walker and my routine is a 45 min neighborhood walk. My walk time increased to 50+ minutes. I also was in the habit of doing light upper body lifts 2 - 3 times per week (15 lbs curls & shoulder presses; 25 lbs bench and tricep pulls).
The radiation portion of treatment was 37 IMRT sessions 66.6 gy total and about half way through, I had bowel irritation (radiation proctitis) which was somewhat painful for me and diarrhea, which required some management.
All of my radiation SEs disappeared 2 - 3 weeks after completion of the radiation.
I do not think that I had breast enlargement (but a treatment friend had a mild case).
I ate my regular diet which includes a lot of vegetables, but few legumes or beans. I cut back on my broccoli and salads.
I also took a GasX many nights.
My tx time was later in the afternoon and my mornings were consumed with managing my bowels.
I was never taken off of the table, but I was warned a number of times about gas.
Bladder management is a challenge and different, and the same, for everyone.
Please feel free to private message me now or in the future if I can provide any additional information.
Best wishes.

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Fall 2024 (age 73) PSA was 6.4. Diagnosis confirmed November, started Orgovyx 12/24/24. Originally prescribed 24 months, hopefully will complete after 18 months late June.
By February before starting 44 IMRT treatments, PSA had already dropped to 3.1. By May, one month following radiation completion, < .01 and has stayed there since then. My next lab is 2/10. I've had all the manufacturer site side effects including hot flashes, weight gain, fatigue, higher triglycerides, loss of libido and ED, and also body hair loss. I exercise M-F with cardio every day and weight training 2X weekly. After 3 knee replacements and a new hip, I'm told not to run. I can walk but have to use a cane for any distance. Radiation has its own issues, with diarrhea that began during treatment and lasted eight months until I started taking Psyllium and a probiotic. The ongoing radiation proctitis will likely be treated soon with sucralfate enemas to promote healing. Currently, I'm near a bathroom from 4:30 A.M.-9 A.M. daily. I know that at this age it's a coin toss, but I'm really hoping to have some testosterone return when Orgovyx ends.

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As an "older" military retiree, I am covered by Medicare and Tricare for Life. I am scheduled for 9 weeks of Proton radiation therapy. Both the radiological oncologist and my regular urological oncologist think the best course for me is to have a month or two of Orgovyx before starting the proton therapy and continuing it during the proton stuff, for a total of 4 months ADT on Orgovyx. When my oncologist submitted the request for pre-authorization, it was denied. In the opinion of ExpressScripts, the governing body in my case, the diagnosis was not cited as a category 1, 2A and 2B recommendation as listed in the National Comprehensive Cancer Network (NCCN) guidelines. Has anyone out there experienced anything similar, and successfully appealed such a finding?

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I took Orgovyx for two years with no side affects.. I am 86 now two years post treatment with PC in remission.

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Profile picture for ken1945 @ken1945

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.

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@ken1945 did you have other treatments or just the orgovyx?

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Profile picture for georgemc @georgemc

As an "older" military retiree, I am covered by Medicare and Tricare for Life. I am scheduled for 9 weeks of Proton radiation therapy. Both the radiological oncologist and my regular urological oncologist think the best course for me is to have a month or two of Orgovyx before starting the proton therapy and continuing it during the proton stuff, for a total of 4 months ADT on Orgovyx. When my oncologist submitted the request for pre-authorization, it was denied. In the opinion of ExpressScripts, the governing body in my case, the diagnosis was not cited as a category 1, 2A and 2B recommendation as listed in the National Comprehensive Cancer Network (NCCN) guidelines. Has anyone out there experienced anything similar, and successfully appealed such a finding?

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@georgemc The justification that I used was that I was a very good complier to taking my meds on time., Also, as a pharmacist, I said that I wanted drug levels on this med to stay the same day to day unlike Lupron that has variant levels as it is a long-acting med. Lupron has highs and lows during the month potentially causing more side effects. Good luck and keep appealing their decision until they get tired of you! Mike

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