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Orgovyx side effects and handling them

Posted by colm @colm, May 9 6:58am

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.

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robertov | @robertov | May 17 12:49pm

Orgovyx does suppress the cancer. I’ve been on it for 2 months+ and am preparing for a 3-month trip overseas. I will get treatment after that. I am at Gleason 4+4 and localized to the prostate, no metastasis.

I had little trouble with the Orgovyx. Fatigue, night sweats for just a couple of nights. No libido.

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1 reply
johnt0707 | @johnt0707 | May 17 1:34pm
In reply to @tjv1156 "On month two. Hot flashes getting way more frequent but some of that is due to..." + (show)
@tjv1156

On month two. Hot flashes getting way more frequent but some of that is due to the fact that it is getting hot, i think. Did you have surgery?
Are you on a 6 month regimen of Orgovyx?

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I'm on an eight month course of treatment. Four years ago I had 43 days of EBRT.

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colm | @colm | May 17 2:41pm
In reply to @robertov "Orgovyx does suppress the cancer. I’ve been on it for 2 months+ and am preparing for..." + (show)
@robertov

Orgovyx does suppress the cancer. I’ve been on it for 2 months+ and am preparing for a 3-month trip overseas. I will get treatment after that. I am at Gleason 4+4 and localized to the prostate, no metastasis.

I had little trouble with the Orgovyx. Fatigue, night sweats for just a couple of nights. No libido.

Jump to this post

Thanks for the input

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chippydoo | @chippydoo | May 18 9:20am
In reply to @mccannr "I also have Gleason 9, and I go to the Moffit Cancer Center. The radiation oncologist..." + (show)
@mccannr

I also have Gleason 9, and I go to the Moffit Cancer Center. The radiation oncologist suggested 6 mo. Orgovyx, and that plan was reinforced by an AI tool called "Aptera AI". I have completed HDbrachy and started SBTR. I have many SE from ADT but the worst is insomnia and daytime fatigue. I believe that exercise is the best therapy. My oncologist has forbidden pickleball and bike riding, which were my go to activities, so now I walk and swim on alternate days. It all falls under the "new normal".

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Why are they forbidding Pickleball and bike riding? I guess I could see bike riding after HD. Exercise has so helped me while on ADT. Some days it is tough to get moving but once I do, glad I did. 2 months left on 6 mos. of ADT and it is getting tougher to get moving.

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mccannr | @mccannr | May 18 1:19pm

I know, I keep asking them and they say no. Now my new SBRT oncologist is banning swimming

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dmougey | @dmougey | May 28 6:10pm

There is a drug I took when the hot flashes started and it stopped them within days. I am so sorry I can't remember the name, but it was prescribed by the radiology doctor, not the hormone doc. It was actually an antidepressant. It did absolutely nothing for my mood, but it ended the hot flashes. I ended that hormone last August, but now one of my nipples are so sore and tender. I saw the oncologist today, I went on doctor vacation since last August I was sick of it, he said that can be expected! Oh the reason I went to the doc was because my semen is bloody brown. My last radiation was almost exactly a year ago. Again, that can be expected! I wish they would have given me a pamphlet about this. My psa after radiation was0.02, It's at 0.33 now, but he says no scan at this time. Back in 3 months. Hope this helps and that's my story

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capatov | @capatov | Jun 9 10:47am

I am in month 5 of a six month Orgovyx regime following 23 IMRT sessions and one HDR boost. I have had very few side effects from the Orgovyx. Zero hot flashes, minimal weight gain, but some occasional fleeting fatigue that resides relatively quickly. I am almost 67

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vircet | @vircet | Jun 9 3:43pm
In reply to @philnob "Hello, I have been on Orgovyx for several years. The side effects, which are predictable, include..." + (show)
@philnob

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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May I ask what stage, PSA, and Gleason Score you were when you started treatment? What treatment (SBRT, IMRT, ,,. ,?) did you have?)
Thanks.

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2 replies
colm | @colm | Jun 9 5:32pm
In reply to @vircet "May I ask what stage, PSA, and Gleason Score you were when you started treatment? What..." + (show)
@vircet

May I ask what stage, PSA, and Gleason Score you were when you started treatment? What treatment (SBRT, IMRT, ,,. ,?) did you have?)
Thanks.

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Stage 3
Psa 5.2

Gleason 9

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philnob | @philnob | Jun 9 7:34pm
In reply to @vircet "May I ask what stage, PSA, and Gleason Score you were when you started treatment? What..." + (show)
@vircet

May I ask what stage, PSA, and Gleason Score you were when you started treatment? What treatment (SBRT, IMRT, ,,. ,?) did you have?)
Thanks.

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Hello, nice to meet you.
I was stage 4, Gleason 6, a PSA between 3, and 4, and I had external beam radiation for 47 days. I hope this can help you.

All the best,
Philnob

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