Orgovyx done. What to expect?

Posted by miked77 @miked77, Apr 15 10:48am

I have been off Orgovyx for 7 days. Having increased number of hot flashes and still having leg pain at night. Libido still gone. Anyone have any experience similar and can give me some advice?
Thanks in advance.
Mike D

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I would expect you will need at least a month for your testosterone to return to anything nearly normal. I am on 6 months of Orgovyx and will end it June 5.

Stay Strong Brother

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Orgovyx SEs took 3 - 4 mos to wear off substantially for me. 8 mos off med, my Testosterone returned to 80% of pretreatment level.
I took 4/5 mos of Orgovyx during my salvage radiation tx last year.
I think that the journey is similar for all; and different for everyone.
Best wishes.

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I took Orgovyx for 4 months that completed 23rd Jan. After these 3 months, I still am having some hot flushes and my T has not fully recovered. I'm a bit surprised that it still is giving me side effects after taking only for a relatively shorty period.

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Was on orgovyx for 1 year and now have been off for about 2 months. My libido is still zero with no sign of improvement. Still having hot flashes. Haven’t had an erection in over a year and I think my penis has shrunk to about one half its original size. I am almost 75, so I did not expect much but this situation is rather depressing. My oncologist told me it could be as much as 6 mos. To recover from side effects.

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I have been on and off ADT and appears to me that recovery from the effects is about 1 1/2 the amount of time you are on it. I'm planning to go on orgovyx for 30 days feel like crap for around 90 days and then feel good for 6 to 9 months before going back on for 30 days. This will all depend on my PSA.

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I've been off for 13 days, way too soon to "notice" the side effects winding down.

My medical team said I should start feeling better in 7-10 days, right...I had two hot flashes last night, one lasting around 10 minutes, the other 24, geez...During the day my sensing is there's been an uptick in the number, why, go figure, I don't know.

Unbelievably, though qualitative not quantitative data, my sensing is hot flashes and fatigue worse...ugh.

Still, I figure three to six months before I should begin to see abatement. It will be interesting to see the lab results in July at the three month mark, where my T is.

Kevin

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@kujhawk1978

I've been off for 13 days, way too soon to "notice" the side effects winding down.

My medical team said I should start feeling better in 7-10 days, right...I had two hot flashes last night, one lasting around 10 minutes, the other 24, geez...During the day my sensing is there's been an uptick in the number, why, go figure, I don't know.

Unbelievably, though qualitative not quantitative data, my sensing is hot flashes and fatigue worse...ugh.

Still, I figure three to six months before I should begin to see abatement. It will be interesting to see the lab results in July at the three month mark, where my T is.

Kevin

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I was on orgovyx for 1 year and now off for 2 months. I also had more hot flashes that were more intense once I was off. They seem to have abated in the last 2 weeks. My oncologist said the side effects could last up to 6 months. Stay strong.
Jerry

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I've been off a 6 months course of Orgovyx for 3+ months now. Hot flashes gone completed for me just before the 3 months point. just had first labs post treatment and awaiting T results. PSA was undetectable which is great. Hoping T is coming back.

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@kujhawk1978

I've been off for 13 days, way too soon to "notice" the side effects winding down.

My medical team said I should start feeling better in 7-10 days, right...I had two hot flashes last night, one lasting around 10 minutes, the other 24, geez...During the day my sensing is there's been an uptick in the number, why, go figure, I don't know.

Unbelievably, though qualitative not quantitative data, my sensing is hot flashes and fatigue worse...ugh.

Still, I figure three to six months before I should begin to see abatement. It will be interesting to see the lab results in July at the three month mark, where my T is.

Kevin

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Kevin, I love your chart, epically helpful. Thank you

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I had an interesting experience with my ADT meds recently. I finally got covid after avoiding it for 4.5 years. Thought I had some super immunity gene but guess not. 😉

The Dr I saw wanted me to take paxlovid and I agreed. It has an interaction with Orgovyx so you need to either stop Orgovyx for 6-7 days of change the timing of when you take the two meds. Given how bad I felt from the covid the first few days I decided to take a 10 day vacation from both Orgovyx and abiraterone. My MO had previously told me that would not have any significant effect on efficacy of my treatment.

I can't say for sure but during that holiday I did not notice any hot flashes. May have been because I was more focused on covid symptoms, but now that I've been back on both meds again the hot flashes are back in full force.

12 more months to go!

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