Orgovyx and the timeline for return of normal testosterone level

Posted by rmp321 @rmp321, Dec 19, 2023

I’ve been taking Orgovyx since 11.09.23. How long does it take for Testosterone levels to return to normal once I stop taking this drug? What side effects have you experienced with this drug?

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Profile picture for ava11 @ava11

wzm,
Are you stopping after 6 months of Orgovyx? I just finished 6 months on being Orgovyx. I also went through SBRT 5 sessions at UCLA. I have an appointment with my Medical Oncologist next week. I will ask him if I can stop taking Orgovyx and what is the risk of getting cancer back.

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I will stop my six months of Orgovyx and Nubeqa next week. Also had 5 sessions of SBRT at UCLA. I will keep you posted as I check my PSA monthly. I anticipate that my PSA will rise again sometime in the future and I will have to resume my drug regimen. In the meantime, I will most certainly enjoy this “holiday.”

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Profile picture for glabelle @glabelle

I will stop my six months of Orgovyx and Nubeqa next week. Also had 5 sessions of SBRT at UCLA. I will keep you posted as I check my PSA monthly. I anticipate that my PSA will rise again sometime in the future and I will have to resume my drug regimen. In the meantime, I will most certainly enjoy this “holiday.”

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I stayed on Orgovyx for full 12months. It has been almost 6 months since I stopped Orgovyx. My quality of life is not that much better! I am getting extreme fatigue bouts sometimes that last only about 15 to 20 seconds. I never had those when I was on the drug! Most often they happen on the day I do GYM workout.

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I am now about 3 months post IMRT radiation and HDR and 2 months since stopping a 6 month Orgovyx regimen. I still get hit with short, strong fatigue bouts particularly on hot days while playing golf. It happened again yesterday and I had to quit

I am not sure if it is just the Orgovyx or the combination of everything but I too look forward to it stopping. My RO PA said this could continue for up to a year

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I am now 5 months past 28 rounds of IMRT radiation. Been on Orgovyx for 12 months and will be on it for another 12 months. August 2024, Gleason 9 and PSA of 6.0 before receiving radiation. Now PSA of 0.08, testosterone of 8. A few side effects from Orgovyx, no hot flashes but damn near total loss of libido and occasional brain fog. Low white blood count, but AST, ALT, and BUN elevated levels. Cholesterol 148 but probably due to my daily exercise regimen of 60 minutes walking or running on treadmill and 40 minutes of weight training and a better nutritional regimen than prior to radiation.

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Profile picture for johnny8924 @johnny8924

I am now 5 months past 28 rounds of IMRT radiation. Been on Orgovyx for 12 months and will be on it for another 12 months. August 2024, Gleason 9 and PSA of 6.0 before receiving radiation. Now PSA of 0.08, testosterone of 8. A few side effects from Orgovyx, no hot flashes but damn near total loss of libido and occasional brain fog. Low white blood count, but AST, ALT, and BUN elevated levels. Cholesterol 148 but probably due to my daily exercise regimen of 60 minutes walking or running on treadmill and 40 minutes of weight training and a better nutritional regimen than prior to radiation.

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Johnny, your situation seems to be very similar to mine. Can you tell me why you chose IMRT ? Can you tell me more details about living with taking the medicines For 12 months?I’ve heard so many scary things but yet the oncologist I talked to said no you’ll probably” do fine. I don’t know what to think or what to expect.

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After consulting with my urologist and my daughter who's a physician, I decided to go with IMRT. Both said that my age (72) usually calls for radiation instead of surgery. Orgovyx did not produce most of the side effects that could have occurred. The loss of libido and occasional brain fog still remain but are not life threatening. My radiation oncologist knew that I exercised on a daily basis and said that this has been shown to contribute to improved outcomes. My next blood work...PSA, Testosterone, Comprehensive Metabolic Panel, CBC with differential, blood lipid profile, will be in early November 2025. Fingers crossed.

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When I started in Jan 8 I had a T of 258. Then then started 25 sessions of radiation in Feb. I was tested Thursday, two months to the day after completing Orgovyx and I was up to 208. Feeling better too. PSA is undetectable. Will test again in January. Best wishes on your journey.

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