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What's your experience with Orgovyx (relugolix)?
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?
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I was on active surveillance for three years. When PSA started rising again (6.4) and a third biopsy showed PC becoming more aggressive, doctors recommended treatment: six months of Orgovyx, and Cyberknife. The first few month of hormone treatment weren't bad, but in months 4, 5, and 6 hot flashes became more intense, and muscle weakness much and fatigue more noticeable. Hot flashes and weakness continued for about two months after treatment, with sleep difficulties. At the end of treatment, PSA was 0.03, and T was 3. My labs 10 weeks after treatment showed PSA at 0.13, and T back up to 255 -- close to pre-treatment levels. So everyone is quite happy with the results so far. The doctors said that Orgovy has a faster recovery, which seems true. I'm 79 y.o.
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2 ReactionsHad radiation treatment in 2009. Cancer back, considering Hormone Therapy called Orgovyx. Any info/feedback on this treatment?
Welcome @artis1301, I moved your question about Orgovyx to this existing discussion:
- What's your experience with Orgovyx (relugolix)? https://connect.mayoclinic.org/discussion/the-orgovyx-thread/
I did this so you can read previous posts and connect with others easily like @web265 @philnob @leebeth @michaelcharles @edva1943 who can share their experiences.
My husband has been on Orgovyx since October of 2021. He loves it as it is much more convenient than monthly injections. I am not a fan of GnRH agonists so his choice was degarelix or Orgovyx. No side effects and his testosterone has always been
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1 ReactionOrgovyx recommended due to:
Faster Testosterone reduction.
Better cardiac side effect profile.
Quicker Testosterone recovery post treatment.
However, Orgovyx can be costly.
Other hormone treatments such as Eligard are highly regarded and might be less costly.
I am in my 3rd week of Orgovyx, with minimal side effects so far; some warm flushes and a bit of feeling "off", which may be diminishing.
Good luck with your decision and treatment.
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2 ReactionsI'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.
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1 ReactionI 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 have decided not to take orgovyx I think the bad side effects far outweigh the advantages… I’m hoping to just get radiation treatment….
@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?
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.