Have you stopped then restarted taking Orgovyx? If so how was it.

Posted by aldenrobert @aldenrobert, Jan 10 3:48pm

I have an aggressive type of Prostate cancer. Over the past 36 months I have had RRP (post surgery PSA 0.37) then followed 6 months later with 34 rounds of salvage radiation (PSA was 0.69 when radiation began and then up to 1.29 4 weeks after radiation was done). I was on active surveillance for the 12 months until a PET/CT scan found a metastatic lymph node in my chest. Then within 3 months I was able to start a clinical trial. The 6 month trial consisted of taking Orgovyx along with Erleada and 5 rounds of radiation to the lymph node half way through. After that all known cancer had disappeared and PSA was down to >0.01. Then 12 weeks after the trial ended PSA was slightly elevated to 0.02 and 4 weeks later it was up to 0.08. Another PET/CT scan is scheduled in 8 weeks along with a bone scan,CT scan and labs. Regardless of the scan results I know ADT will be recommended. By the 5th month of it the last time the side effects were so bad I wanted to stop but I only had a few weeks left and just dealt with it. It's been a little over 4 months since I stopped the drugs and I am just starting to feel normal with only lingering side effects. The thought of going through chemical castration again and so soon has me a bit freaked out. I'd love to hear how others have done with a second round and if was different than the first.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Here's my clinical history...

1st time on ADT, Jan 17, part of triplet therapy, 90 day shots.

Side affects:

Hot flashes
Fatigue
Muscle and Joint stiffness
Genitalia shrinkage

2nd time, April 23, 12 months (at the nine month mark now).

Same side affects...

Impact of side affects...annoying, irritating...but did not get in the way of living. Went on vacations, skiing with friends in Colorado, exercised pretty much every day, ride my bike...

There are times where I take naps in the late afternoons. In the winter, I often run my AC in the car. When my wife suggested I wear a nice sweater to the Christmas part I said no way, at times I disappear to our back deck even when it's in the single digits to cool off.

Kevin

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Thanks Kevin, I am happy to hear that your side effects the second time around aren't worse than the first time.

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@aldenrobert, you may also be interested in this related discussion:
- Anyone take a Treatment Holiday? Intermittent use of ADT like Orgovyx
https://connect.mayoclinic.org/discussion/anyone-take-a-treatment-holiday-intermittent-use-of-adt-like-orgovy/

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Exactly what does Orgovyx do?Is it similar to Eligard?

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They both are drugs given to reduce testosterone. I believe Eligard is an injection that you get every few months. Orgovyx is a oral drug taken daily. Usually for a 6 month to 12 month course. I just did one 6 month course but it was along with a second oral drug Erleada as past of a clinical trial. I took two drugs at the same time both with similar side effects. I not sure which drug had what side effects. I am just trying to see what others who took Orgovyx for a course stopped for awhile and started back up again experienced. Were the side effects cumulative, like breast enlargement, testicle shrinkage, bone and muscle loss, and especially joint degeneration.

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