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Can a short term of taking Orgovyx cause leg pain and weight gain?
I have been on ADT Orgovyx just for four months and half but did not gain any weight while I was on the drug nor any leg pain. However, just after I stopped taking the drug, I have gained 12 pounds in just 30 days. In addition to the weight gain, my legs are hurting , especially my knees. My testosterone is gradually coming back. Last time check it was 98. I wonder if there is any medication to take for leg pain or it will disappear as testosterone gradually returns to baseline.. And for my weight gain, it looks like it is not coming off and everything is hanging in the belly. I have noticed a fat belly. Prior to Orgovyx , I took a 3-month shot of Eligard, no weight gained no pain on my legs. Is it normal or i am missing something. Please I want to know!
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@pesquallie
\\There seems to be a growing consensus that ADT and low testosterone may be doing more harm than good. Studies at Harvard and Duke both indicate that low testosterone may actually make aggressive prostate cancer more aggressive.
OMG, if the Duke guys are right, many of us will die before we get the results.
What if we drop the ADT and use only with Erleada? Has anyone ever tried that?
@denis76
I attend weekly advanced prostate cancer meetings at ancan.org. There at least 10 people there that are on Nubeq Alone. It works quite well to suppress testosterone so you don’t need ADT with it. That works for a lot of people, but not everyone. Some people do need ADT for testosterone suppression. I am one of them.
I’ve been on ADT for eight years, I’ve been undetectable for 26 months. Maybe I’m an exception, but in my case, at least the lack of testosterone has not made my cancer worse, yet.
There are issues with low testosterone. Some of the prostate cancer cells can become immune to low Testosterone and start to grow even in that environment. In those cases, some doctors have used BAT to give people high doses of testosterone, which then kills off the cells that have become capable of growing, even though they don’t need testosterone. It’s a strange solution, but it does work for some people. I gave you a link to an article about that, Not sure you were able to read it, but it also talked about mutations and advanced prostate cancer. Some really interesting articles.
By the way. I disagreed with your doctor that Nubeqa working better with BRCA2 to suppress prostate cancer. I did some research on this, and it actually appears to be true, though Xtandi (Enzalutamide) also works well with BRCA2 while Erleada does not appear to have the same benefit. Apparently, ATM does not have the same advantages.
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3 Reactions@jeffmarc thanks for the information. I read somewhere in these comments that Orgovyx loses its effectiveness after 4 years. Some are taking it for a year then not until their PSA count increases. My big complaint with Orgovyx, I think it affects the tendons and bones around my knees to a point where I have trouble walking. I occasionally have chills also. I take my temperature and it is 1 degree below normal.
@tldrelaxen
I don’t think Orgovyx Is being used any different than other ADT drugs. Some people who have intermediate cases of prostate cancer may be on ADT for a year and decide that since their PSA has stayed undetectable for that amount of time, they will stop taking it and see what happens. This isn’t unusual, but it is done with all different ADT drugs.
You even see people with advanced cases that want to do the same thing. They’ve been told they have to take ADT for two years but still want to stop sooner.
I’ve never heard of a four year limit with any ADT drug. I’ve been on it for eight years, Six years on Lupron and two years on Orgovyx. Of course I have BRCA2, so that’s one of the reasons I have to do that.
If someone is only on Orgovyx They may become castrate resistant after four years. That happened to me on Lupron after 2 1/2 years, but I keep taking ADT because some of my cells are able to be helped by ADT.
@jeffmarc Thanks for your response. I don’t know what BRCA2 means. I’m 82, in 2009 stage 3 prostate cancer detected. Chemo & radiation for 42 weeks. Cancer returned 2023 & began a 2 year regimen of Orgovyx in February 2025. I just like to know that 1) is Orgovyx working and 2) that Orgovyx isn’t going to cripple me. I play golf 4 x per week but walking, squatting etc. is becoming difficult. I probably need knee replacement but at my age I’ll pass
@tldrelaxen
BRCA2 Is a genetic problem. It greatly increase the chance of getting prostate cancer, Breast cancer, Pancreatic cancer, Skin, cancer, and a few other cancers.
You should talk to your doctor about putting you on a second drug. Staying on ADT like Orgovyx Alone can cause you to become castrate resistant. That greatly shortens the Life of many people. A drug like Nubeqa Has almost no side effects and would be a great addition for somebody your age. Taking it along with Orgovyx delays the onset of castrate resistance by many years.. I am 78 and on Orgovyx And Nubeqa. I know a lot of people and their 70s and 80s that are on only Nubeqa. It alone keeps the PSA way down because it prevents testosterone from working with prostate cancer calls. That allows people to give up ADT and stay with undetectable PSA. When your testosterone comes back, you feel a lot better.
After seven years on ADT, my oncologist and I figured my testosterone would never come back so I quit taking Orgovyx For seven months. My PSA stayed undetectable because I was on Nubeqa. Unfortunately, my testosterone started coming back pretty quickly And because of the BRCA2, my oncologist wanted me to go back on Orgovyx. I’ve had prostate cancer for 16 years and it has reoccurred four times. Unfortunately, I cannot stop the pills.
Just some things to think about and to discuss with your doctor.