Orgovyx.......... not so great. Radiation.....almost pooping my pants!
Hi again, all. I started orgovyx on April 1st. LOL, yeah, April Fool's Day. 🙂
I have experienced dizziness; the first 2 weeks were bad. It seems to be resolving, but it's not completely gone.
I have been experiencing wicked and frequent (every 15 minutes) hot flashes. So much so that during some of them, sweat is pouring down my head, and I soak my shirt. The worst ones come at night. I have just ordered, on a 14-day trial, the Embr Wave 2 and am going to try that after I received this from my urologist:
"With positive lymph node involvement, plan is to have him on at least 1 year if not 2 years of ADT. Whether this be with oral agents such as Orgovyx or IM agent such as leuprolide, hot flashes unfortunately are a common side effect of such medication.
Treatment of hot flashes with ADT treatment can be challenging. Numerous medications are often utilized with variable improvement. Options include Megace, gabapentin, and even SSRIs at times.
I will trial Megace 20 mg daily for now and see how that works for a few weeks. Patient should be counseled that there is a small risk of DVT with Megace utilization."
I chose NOT to go with Megace due to its list of common side effects and opted for the Wave. I am seeing my PCP tomorrow and will ask her for Gabapentin. I am already on an SSRI (maybe ask to increase the dosage?). I have also purchased a small cooling fan for beside my bed and will give that a try.
I am on day 8 of 28 for radiation. The only side effect I am having currently is severe diarrhea about 45 minutes after the treatment. I see the radiology oncologist once a week and saw his substitute today. I keep getting told that "it's awfully early in your treatment to be experiencing diarrhea. That' real helpful. Today I thought I was going to go on the table! I had to run directly to the bathroom after my treatment. I was told to avoid: any fibers, fresh fruits and vegetables, and dairy. They told me to try Imodium, yogurt, and a probiotic.
Opinions?
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I followed the attached during radiation. It worked well. For hot flashes, sugar free popsicles work for me. As soon as I feel one coming on, I bite into one and it calms right down. YMMV. They do become less frequent as time passes. Best Wishes.
RadiationTherapyforProstateCancerNutritionMar2025 (RadiationTherapyforProstateCancerNutritionMar2025.pdf)
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11 Reactions@mjp0512
THANK YOU!!!
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1 ReactionThe big advantage of Orgovyx is that you can stop. The symptoms will go away in a few weeks if you stop taking it. You would be committed for months on Lupron, and many more months for recovery. What stopping would do for your treatment is a different question. Obviously, it will not be positive.
Now you know why they say full bladder and empty bowels before radiation. Did you get SpaceOar or another gel before radiation? Seriously, if that happened to me, I would be worried that the radiation was hitting my rectum very hard and could be giving me proctitis.
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3 ReactionsThe pooping problem does happen to a lot of people. I was just speaking to a friend of my brothers that had it happened about 10 days into his radiation. That was after he was having serious burning problems while peeing. A few days after that problem started happening with pooping he found it got better, Even though he wasn’t finished with his final treatment until yesterday. He was having 20 sessions but because he was having such serious problems they were having him take off Friday so he had a three day Weekend to recover some.
Now the hot flash problem. I used to get really serious hot flashes with ADT. The sweat would pour down into my eyes and at night I’d wake up with a sheet, completely wet under me. After a year, my oncologist recommended I get a depo-provera shot And it pretty much stopped the hot flashes, Almost completely until I went on Zytiga. It’s a shot you get every three months. It does not cause breast enlargement. I’m including a slide from one of the doctors at Mayo that did a talk about how to resolve hot flash problems. It discusses a lot of different drugs you can take. I am on a lot of gabapentin and it didn’t help me at all.
I’ve been wearing an Embrlabs wave device For about five years. It has helped a lot and almost completely stopped my hot flash problem at night. During the day, it was not as successful when I had really severe hot flashes. You have to make sure to hit the button for daytime flashes as soon as you start to feel it coming on.
I’ve been working with Embrlabs For five years and have reported many bugs in the Software. They fixed them all. I also did a one hour talk on the Her podcast, with their medical Advisor, Discussing how men get hot flashes too.
https://support.doctorpodcasting.com/client/her-radio/item/45742-men-get-hot-flashes-too
To set the device for the best configuration
Click the bottom left Feel button, scroll down to hot flashes and click it. Scroll down the hot flash cooler five click it, click on “hot flash cooler five” and hit start session. Click the Now round button where you hit start and it will stop the session. Now go back to the main feel screen. Hot flash cooler 5 Should be first in the list, hit the three dots in the right corner, Click on edit and make the temperature level maximum a five. Hit. Save Session. Want to repeat this for all night cool. Click the bottom left Feel button, scroll down to hot flashes and click it Pick all night cool, set The number of hours you want And start it. Then stop it and go back to the main feel screen all night cool Should be the first thing listed. Click the three dots select edit put the cooling on maximum all over to five and hit save session.
Now You have to set the buttons for what you want. To do that you go to settings/session presets. Click on “dotted button” and pick the hot flash five minute. It will probably be second in the list. Select it and hit OK.
Click blank button And select all night cool. Hit ok. DONE!
You now are configured hit the button with the raised dot two times and it will give you five minutes of cooling. Try hitting it the moment you start to feel the hot flash. It will come on a little bit and then will not get so intense.. When you’re ready to go to bed, double click the blank button and it will send cold waves. Occasionally you won’t even notice it at night, but it should stop flashes.
You can always reduce the cooling by following the above instructions.
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3 Reactionsyep- happened to me..the ADT nearly broke me but stayed with it...I didn start my IMRT for about 60 days so I was doing ok with the Orgovyx. The first few weeks of radiation I felt some fatigue..but no diarhea..but did have to stop one day and go roadside by my truck..people honked when they went by ( " momma look, an old man taking a dump by his truck, lets call 911 and get him put in jail !") ...I went on a fire ant bed and they nearly got me ;=) made it back to truck and fortunately I had plenty of towels..
I had a few other incidents..and still do now and then, 10 months into PC odyssey...good news is PSA has been undetectable for 9 months..but ADT and radiation and anguish make this PC journey not for sissies...
Most everyone here has prob had moments like you have described...it got better for me and I hope it does for you..be strong, bro !
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7 ReactionsMy husband had terrible hot flashes and his doctor gave him a prescription for Megestrol. May not be right for everyone but his hot flashes are completely gone.
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6 ReactionsI started Orgovyx in December, 2024 and had 44 IMRT treatments for prostate and pelvis during Feb.-Apr. 2025. Diarrhea started during radiation and lasted about 8 months until a support group recommended Psyllium (normally for constipation but thickens the stool) and a Probiotic from Ancient Nutrition. Diarrhea stopped in December but frequent/urgent BMs continued and I added daily Imodium. Although SpaceOar was inserted several weeks prior to radiation, I have been diagnosed with radiation proctitis. I had four weeks of twice-daily Sucralfate enemas in March which stopped the occasional bleeding and have just finished 30 days of 1000mg Mesalamine suppositories which have helped marginally with frequency and urgency. I take 5mg Oxybutynin twice daily for bladder frequency and hot flash control. For some, it works great but for me the improvement has been minimal. I am scheduled to finish Orgovyx at the end of June (18 mos.) and will look for improvement. Best wishes!
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6 ReactionsI am two months into ADT, and word is still out on radiation. But yes, the hot flashes... Mine are not as severe, but I've done this: 1) Get a bigger fan. My ceiling fan works great to dry me off at the outset of a flash, if I drop the bedcovers quickly. 2) Get up to pee when a hot flash starts. Getting out of bed is cooling in itself, and anyway, you know you gotta and might as well. Hot flash is over by the time I get back to bed. I also use the early-hour bathroom visit to take my Abiraterone, which avoids having to time my eating around that if I take it during the day.
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2 Reactions@guybe yes mine- at least for now- are not too severe and over quickly..but seem to revolve around having to pee ( this is at night) I dont seem to have many during the day...thankfully.
One thing about this forum is it gives me a bit of calm knowing other guys are going thru similar stuff and making the best...otherwise it would be more worrisome..when I have a particular side effect, I pull up this site and see 'ole so and so' is dealing with it too...if he can handle it, so can I..or misery loves company ;=)
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5 Reactions@guybe
Abiraterone really exacerbated my hot flashes, even though I had a solution for it with just ADT.
At night before going to bed, I go in and brush my teeth, When I get back to the bed, I have a hot flash almost every night. I live where the temperature in the house is almost always under 70 at night. Getting up, didn’t Help in my case. Fortunately, my hot flashes aren’t too severe anymore, and my wave device usually keeps it under control, though sometimes I have to turn on my 6” fan right next to my bed. I stopped taking abiraterone three years ago, really helped the hot flash intensity problem.
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5 Reactions