Community Member
a month agoHello everyone. I've asked a question here in this forum before. I have a new one. I'm trying get some feedback on Xtandi and Nubeqa. Has anybody here been prescribed one of these drugs and what, if any, symptoms have you encountered?. Also how long have you been on the drug. I know it's typically used with Orgorvyx or other testosterone reducing drug or shot. I am presently on orgorvyx and wil start radiation treatment in a week. Following radiation, the medical oncologist has prescribed Xtandi. From what I've been able to see, while both are very effective, there seems to be more symptoms associated with Xtandi, in particular brain fog because of crossing the blood-brain barrier, fatigue, and possibility of seizures particularly for those who are prone to them. Nubeqa seems to have less or more moderate side effects from the papers I've read. Looking for some real-world feedback. Thank you Mike
Accepted Answer
This is such an important question about treatment options, and it's great that you're researching and seeking real-world experiences from others who have been through this. Both medications have shown effectiveness in clinical studies, and patient experiences can vary quite a bit from person to person. Hopefully some community members who have taken either of these treatments will share their experiences to help give you a fuller picture alongside what your medical team has told you about the potential benefits and side effects for your specific situation.
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Community Member
a month agoI have been on Orgovyx and Nubeqa since April 2026. I still have fatigue, insomnia and occasional brain fog. Exercise seems to help. Just have to push and get over the fatigue. My PSA and tester one numbers are very good so far. Keep trucking my friend!
Community Member
a month agoThis is such an important question about treatment options, and it's great that you're researching and seeking real-world experiences from others who have been through this. Both medications have shown effectiveness in clinical studies, and patient experiences can vary quite a bit from person to person. Hopefully some community members who have taken either of these treatments will share their experiences to help give you a fuller picture alongside what your medical team has told you about the potential benefits and side effects for your specific situation.
Community Member
a month agoThank you John that's helpful to know. Continued good news!! Mikr
Community Member
a month agoI’ve been on Orgovyx and Nubeqa for almost two years. PSA was down from 1.9 to <0.01 in two weeks. Very successful in that regard but very fatigued even with gym workouts and walking 3x a week, hot flashes throughout the day sometimes and weakness in legs with restless legs at night that keep me up, also weight gain with inability to gain muscle so not good as far as side effects go. I would say to go with Nubeqa it does work but expect side effects, just hope you do better on it. There’s a possibility of taking a chemo vacation after next blood test which I’m looking forward to. Has anyone had a successful “vacation” from ADT? I would like to hear your experience.
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a month agoI started xtandi and 2 weeks in i had enough. Major brain fog. Taking orgovix and nubeqa now. No brain fog. Mainly done fatigue and hot flashes.
Community Member
a month agoHello, I have been on xtandi and eligard for 2 plus years. Side effects encountered was fatigue and hot flashes which was eligards side effects. The most prominent caution from my medical team was increase in the torso and breast size and weight gain. After 2 years on Xtandi, I incurred signicant breast and torso size. When I was on eligard for 1 year I did not notice these side effect which proved that Xtandi was the medication causing these issues. But I swear by xtandi effectiveness.
Community Member
24 days agoMichael, I’ve been on them for 4 months and even during 3 weeks of radiation treatments. All of the side effects are true, brain fog, extremely fatigue, hot flashes that out of the world, frequent urination. You’ll get what I call bitch tits, your manhood will really shrink. Me personally I’ve resigned from not having sex. It did however lower my PSA to 0.04. Have to take the good with the bad.
Community Member
21 days agoThanks to all who provided some insight.. my inclinations to go with ne Nubecca. They didn't want me to start on anything until after my radiation treatment which should end on November 20th. Everything I read tells me I should expect some significant side effects with either drug. Orgorvyx I've handled pretty well at least for the first 40 days... hot flashes but nothing extraordinary.. they seem to last very briefly and then gone...I supplement with calcium and vitamin K2 to help with bone loss.. no weight gain in fact just the opposite but that could be because I've cut sugar out of my diet... I've been monitoring my glucose and blood pressure and all seem to be staying at least no worse than what I had before...sometimes better.. As for aches and pains.. well I'm 76 so you never know which are drug and which may be age related.. I just got through playing golf and shot pretty good so I'm going to use that as my barometer:-) thanks again I appreciate all the feedback. Good luck to everyone.
Community Member
21 days agoMorning everyone, Michael, I did just radiation treatments like 11 years ago, it came back 2 or 3 years ago, can't do radiation again as it came back metastatic stage 4, been on orgovyx since the beginning, then Xtandi, number of side effects, little nausea & bad depression, switched me to Nubeqa less side effects, but no testosterone in my body, I'm tired, still depressed & fight incontinence, most if not all my symptoms are due to lack of testosterone, but to me the Nubeqa is easier on me!!!
Community Member
21 days agoCertainly sorry to hear of your recurrence.. thanks for the information! Mike
Community Member
15 days agoAfternoon all.. well I just had my second treatment of radiation therapy. Only 38 more to go :-) I'm curious as to how long after anyone started Salvage radiation, prostate removed prior to radiation, did you feel any type of side effects? The technician told told me that if I did feel any side effects, it probably wouldn't be until late in my treatment. Thanks. Mike
Community Member
14 days agoYes, Mike, the onset of my 25 “side” effects—which in my case are “devastating” effects—didn’t emerge till the last of my 42x EBRT in early 2024. As of now, 2 years and 3 months later, the only progress I’ve made has been by my own research, investigation, and action—opposed by my “care” team, conventional medicine, and health insurers.
Community Member
8 days agoHi Mike, I have been on daily 1200mg Nubequa orally since April of 2025. Also Lupron injection every 3 months since the same date. As others, Fatigue during the day, insomnia at night, muscle weakness , but working very well, has brought PSA & testosterone to 0.5 and 8
Community Member
7 days agoTim and Dave thanks for sharing.. my medical oncologist has perscribed me Xtandi.. however she has no problems if I feel like I want to go to Nubeqa but she'd liked me to try X first and see what side effects I may have. She said, and she is correct.. it'll be easier to obtain Nubeqa through the VA. Eithert way, I won't start drug until November 20th after completion of my radiation therapy and I am still on Orgorvyx and will remain on that with the either xtandi or Nubeqa. Still very early in the process I go for radiation therapy number 8 this morning. So far I feel great but clearly early. The only side effect I am feeling so far are some minor hot flashes .. hope it stays that way. Tim did you mean 0.05 for your PSA? Mike
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