I've been taking mono xtandi for roughly 8 months. My most recent PSA showed and increase from 0.27 to 0.53. My MO and I decided it was time to resume ADT. Surprisingly, he was able to get Orogovyx approved and I started it last night.
I'm panning the group to check if the half dozen or so SEs are common or do most have no issues taking the med.
dad has been on orgovyx since 3 months. Don’t notice any major issues
I’ve been on both a couple times, with a holiday in between. Much evidence that BOTH are far superior to solo.
Side effects are as expected of no libido and some brain fog. FYI , your bones and heart have risks, too, but fortunately, I’ve not seen them.
Last year , the combo brought me down from 125 to .o2 in just 6-7 weeks. I also do HIIT swimming and l,any based diet
How long was your holiday? You stopped both Orgovyx and Xtandi during the vacation?
No...just the ADT after the EMBARK trial came out. My MO wanted to give me a break from the ADT and so I was on the mono-enzalutimide since January
Thanks. I actually meant that for Cape1, but glad to get your feedback as well.
yes Stopped both. Holiday was 5 months, and o went back on both as my PSA had risen to 18
What is curious is that I started with cancer in the prostate, my hip, which broke, and 1-2 other bone hotspots.
The PSMA Pet scan I had six months ago before starting my holiday showed nothing in the prostate or broken bone area and just one hotspot
I asked my MO and RO ( who I’ve talked to, but never used) if this was normal, and they said “definitely not”, but couldn’t draw them into say any more
My hope is that going back on both, combined with HIIT, plant based diet, fasting, and various Jane McLelland things will knock out the remainder hotspot may be wishful thinking
Sounds like an excellent turn of events. Have you been on a bone strengthening drug?
Do you mean Prolia? They try and pitch it to me every visit, but I politely decline. Much evidence of side effects including Jaw Necrosis. I do take calcium pills and a spoonful or two of yogurt.
I also take Magnesium and vitamin D with K, as crucial for bone health
@Cape1, Small doses of prolia (what I get every 6 months) or another bone building drug are mandatory when on ADT. Bone loss under ADT is terrifyingly fast.
See this doc for mention that PCa accelerates bone fragility -- " metastatic cancer cells stimulate the activation of osteoclasts and osteoblasts. The latter paradoxically increases the fragility of the bone," and "men undergoing ADT are four times more likely to develop significant bone deficiency" It also has a section on denosumab (Prolia).
ncbi.nlm.nih.gov/pmc/articl...
Worrying to the point of refusal about the ONJ SE of most all bone medicines, which is manageable by good dental care, is a dangerous decision in and of itself. PCa and all the treatments for it and SE's are fraught with pick-your-poison decisions.
I get nausea to point of throwing up about 40% of days in first week. Very tired too.
Most SE from Orgovyx are due to life with no testosterone and thus also no estrogen. Which SE manifest and to what degree vary to each man. I know one man on permanent ADT (orchiectomy) who is on low dose estradiol patch. He says it completely eliminates his ADT SE such as hot flashes, fatigue, brain fog, etc.
The side effects I experienced with Orgovyx were hot flashes (mostly nocturnal) and some fatigue. I recommend daily exercise--at least a 30 minute brisk walk. It's was amazingly effective in my case and easily tolerated. Good luck.
I did 12 months of Orgovyx, April 2023-April 2024.
Side effects:
Hot flashes
Fatigue
Genitalia Shrinkage
Weight gain, mid section
Muscle and joint stiffness
Annoying and irritating but not life altering. In a qualitative way, I would say the side effects were less severe than the 18 months of Lupron.
When I stopped, the fatigue and muscle and joint stiffness went way in the first two to three weeks, the hot flashes took three to four months, same for genitalia shrinkage. The weight gain, hmm, dropped around 7-9 pounds of the 16 or so I gained, working on the rest.
Kevin
My only opinion is that you'll probably become a bigger pain in the ass.....🤡
Good Luck, Good Health and Good Humor.
j-o-h-n
Impossible
I just finished 9 months of orgovyx. Besides the expected/-intended side effects( loss of libido, etc) I experienced occasional hot flashes mostly at night, some joint pain, and some insomnia and fatigue. Approximately 2 months after ending almost all of the side effects have disappeared. I am waiting for my next test to check on the PSA numbers which hopefully are still very small. No regrets taking this pill over the shots.
I was on Orgovyx (and Zytiga) for almost 2 years. Had some fatigue which exercise helped diminish and some slight brain fog. No hot flashes or other more serious SEs.
Of course, everyone is different but IMO, it is the best ADT for SEs available.
I agree
So far7months in no bad SE's, Mild fatigue and hot flash now and then. Tolerable
It seemed from the literature that various stomach problems were reported. So just checking if this not very common or common.Fortunately I don't get the bad SEs from Hormone Therapy. So I'm on enzalutimide at the moment and not having any SEs. Two days into the addition of Orgovyx and feeling the same.
It seems all ADT drugs have a list of SE's . Not sure how they gatherthe data . I was told take with food.
Been on Xtandi and Orgovyx for almost 4 months now (started them at the same time). Side effects are same others have reported and also have had more gas and diarrhea that I’m not sure which drug is to blame (could just be the combination causes it?)
All have been very manageable and the brain fog decreases the more I evercise.
Haven’t gone crazy on diet, but avoiding red meat (indulge about once or twice a month) and managing carbs and portions. Have managed to lose weight since baseline doing so.
I’ve been on Orgo for just over6 months now. Had a slew of SEs, mostly identical to the list Hawk56 listed. CV SEs were the worst. In fact I almost stopped the drug because of high BP. Was finally able to get BP meds that have dropped systolic from the 200 level to the 120s. Miraculous. Fatigue has diminished, I’ve been able to start exercising again (like everyone says, you’ve GOT to exercise), no joint pain, even my hot flashes have almost disappeared. I feel like myself again—minus the libido. Bone loss is real. I’ve started on Caltrate+vitamin D3. My RO has decided what to do about that yet. Anyway, I feel I can endure the full 2-year regimen of this stuff now. Now I just gotta get through the RT. Not great.
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