Orgovyx side effects and handling them

Posted by colm @colm, 2 days ago

Hi all I am new here and looking for some help. I have Prostate Cancer gleason 9 and starting Orgovyx today. I have tried to find the facts about side effects and how to help control or alleviate them. Read that some people have no side effects others have various ones. Would appreciate feedback from anyone who has been through the same scenario as I am about to. I have not started radiation treatment yet, I see the oncologst on the 27th, Thank you and I wish you all the very best.
Colm.

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

There's a lot to read here: connect.mayoclinic.org/discussion/the-orgovyx-thtead/?ph=27#comment-1300054

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Almost three years of shared experience.

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Lupron/Eligard/Firmagon/orgovyx can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

If you are having a lot of intense, hot flashes there are Solutions. That alone almost needs its own discussion. My Oncologist prescribed depo-provera for me before the Embr device. I would get shots every three months and it pretty much stopped my hot flashes while on Lupron, but when I started Zytiga I started getting hot flashes again, just not as intense as it used to be.

There are other hormones that I have heard work. Speak to your doctor about it.

Some people can get acupuncture and it works.

I’ve heard from a couple people that eating tofu daily works for them.

I have an embrlabs.com wave product (wave 2). I've used it for Over three years now. It's like a refrigerator that looks like a watch and sits on the inside of your wrist. You could set up one of the buttons for their night mode .
Hit the button twice and It Produces cold waves at measured times during the night and prevents hot flashes and night sweats. They used to bug me, before I got this device. When you start to feel a hot flash coming on, you hit another one of the buttons twice and it sends cold chills through your arms and it reduces the intensity, shortens the life and can stop the hot flashes if hit quickly enough.
https://embrlabs.com/
If you are having problems with fatigue strangely enough exercise seems to offset fatigue. Walking a couple of miles every day doing some weight training Can actually reduce the fatigue. Weight training can also help rebuild the muscles that are being weakened by the drug And also keep your bones stronger.

If you are on ADT for more than about six months, you should definitely get a bone straightener like Fosamax, Zometa or Xgeva.

Depression is helped by drugs, speak to your doctor about possible options.

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Resistance-training exercise has been shown to minimize the side-effects of ADT.

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As @jeffmarc says along with others who posted, the side effects of ADT are generally well known and understood. The more common ones:

Hot flashes
Fatigue
Muscle and joint stiffness
Genitalia shrinkage
Loss of Libido
ED

There are others, less common, but still, a possibility - depression for example.

From my experience, keeping in mind statistics, Bell Curve, Mean, Mode, Median, Frequency, Standard Deviations, hard to say where your experience will fall but likely the more common ones, to what severity, that may depend on lifestyle.

There are some medical solutions to the hot flashes...

How to mitigate the others...
Exercise - cardio and resistance
Diet - all things in moderation
Stress - keep it low

You don't have to be an Olympic athlete, walk, bike, swim, hike, but you need to do some combination of aerobic and resistance exercises.

There are the little things - Our cars have dual climate control so when I was on ADT, I could set my climate control to "freeze." while my wife's was a balm 72 degrees. Our cars also have the seats that blow cold air so there's that. I swim in the pool at the gym frequently, never used the heated pool. During the winter, fall and spring, you could find me out on the back deck where it was "cool," I ran the fan in the bedroom, I refused to wear pullover sweaters, sweatshirts...You get the idea.

Kevin

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Hello,
I have been on Orgovyx for several years. The side effects, which are predictable, include weight gain, and breast enlargement, with extreme myopathy, in the quadriceps, and hamstrings in both legs. Over a period of time these side effects have increased. At the recommendation of the integrative medicine department I am now on a regimen of magnesium to treat the myopathy with very little scuccess. After approximately 2 years on Orgovyx my PSA number started to rise so my Oncologist added Xtandi as part of my treatment. Next month I will have a new blood work up, and a Pet scan to see where I stand. I am happy to report I have not experienced any hot flashes while taking Orgovyx, or Xtandi.
I wish you all the best on your journey to find something that works well for you.
Best regards,
Philnob

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I have now been on Orgovyx for about 3.5 months of a 6 month regimen. I am also right now 23 days into a 28 treatment proton therapy regimen. As for the Orgovyx, I have had almost no side effects. The only thing noticeable is a lack of libido, and since I don't currently have a partner that's not a big deal. Maybe better in some ways 🙂 I've been a runner and lifter for a number of years and have continued both running (4-5 days a week) and lifting (2-3 days a week). Whether it's luck, genetics or working out the Orgovyx has been almost inconsequential. Good luck!

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@daveinflorida

I have now been on Orgovyx for about 3.5 months of a 6 month regimen. I am also right now 23 days into a 28 treatment proton therapy regimen. As for the Orgovyx, I have had almost no side effects. The only thing noticeable is a lack of libido, and since I don't currently have a partner that's not a big deal. Maybe better in some ways 🙂 I've been a runner and lifter for a number of years and have continued both running (4-5 days a week) and lifting (2-3 days a week). Whether it's luck, genetics or working out the Orgovyx has been almost inconsequential. Good luck!

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Thanks for you view and good luck to you

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I second the recommendation for the Ember Wave device. I started taking orgovyx on Dec 19 2024 and will stop June 19 2025. Hot flashes and night sweats were a big problem. I got the Ember Wave about 6 weeks ago and it has made a big difference, especially at night. I highly recommend it. It only costs $20 per month

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