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.

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

@laccoameno5

Always remenber that PC is full of controversy and outright falsehoods from oncologists as to SE's and especially RP. Inform yourself from others on this site. They will have the best info about treatment outcomes more than any one oncologist. You are correct, some have very mild SE's, others are unbearably horrible and can include suicide. Oncologists don't like an informed patient at all . Hard questions really throw them I have found as well. Most seem to suger coat their diagnosis. Makes you feel better in the short term but is so cruel as to the truth about your PC. PC is a horrible,ugly, relentless adversary that is sadly WAY under publicised even today WOW!
So get busy and READ,READ,READ, about your condition. Please take the time to educate yourself.
Lacco

Jump to this post

Where is the best place to get info to educate myself and how well does Orgovyx contain this evil disease.

REPLY
@brianjarvis

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

Jump to this post

You bet.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9997646/
Resistance Exercise Training Increases Muscle Mass and Strength in Prostate Cancer Patients on Androgen Deprivation Therapy

I have been a avid worker outer for my whole adult life . I've been on Orgovyx now for 6 weeks and yes, my workouts are compromised , but I am adamant about keeping up my workouts. I'm only going to be on Orgovyx for 6 months. Supposedly , the benefit of Orgovyx is that the body recovers more quickly.

REPLY

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".

REPLY
@colm

I have just been put on Orgovyx , I was diagnosed in February and not seen an Oncologist yet. Trying to find out what to expect and to find out how well Orgovyx holds back the progression. I am fortunate that my PC is contained in my Prostrate. Any info would be greatly appreciated.

Jump to this post

You are in the same boat as me, more or less.
With a median follow-up of 51 months, the 5-year PSA relapse-free survival for men with low-risk PC was 92% with the addition of ADT vs 84% without ADT (P = 0.09). The issue of RT–HT in low-risk PC patients was also indirectly addressed by a retrospective analysis conducted by Ciezki et al.28 The study included 1,668 patients with low- and intermediate-risk PC treated at The Cleveland Clinic Foundation with EBRT, RP, or prostate brachytherapy with or without androgen deprivation during 1996–2001. The 5-year biochemical recurrence-free survival (BRFS) rate was 90% vs 93% for EBRT alone or with ADT in low-risk patients.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3004567/#:~:text=Specifically%2C%20the%20overall%20survival%20(OS,CI%5D%3A%200.83%E2%80%931.39).
Those are pretty good odds , I'd say.

REPLY
@linric70

My husband has been on Orgovyx plus Xtandi for over 2 years. No surgery because it has metastasized in bone and lymph node. He has PSA blood draws every 6 weeks, if it's over 2.0 he stays on the meds, if it's under he can take a "vacation", no meds. The side effects never go away. He has hot flashes during the day and night sweats throughout the night. He has a fan set up on his side of the bed which helps some.
He's learned to accept it for what it is - holding his cancer at bay until something better comes along.

Jump to this post

I used to have terrible night sweats I used to wake up and have the sheet totally soaked under me.

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/

REPLY
@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".

Jump to this post

It’s Artera AI
Hopefully the test is really accurate. The NCCN guidelines call for 18 months to two years of ADT For a Gleason nine.

You should consider working with a genito urinary oncologist, The ones that specialize in prostate cancer. You are a Gleason nine which is very aggressive, it would make sense to have an GU oncologist working with you not just a radiation oncologist.

REPLY
@tjv1156

You bet.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9997646/
Resistance Exercise Training Increases Muscle Mass and Strength in Prostate Cancer Patients on Androgen Deprivation Therapy

I have been a avid worker outer for my whole adult life . I've been on Orgovyx now for 6 weeks and yes, my workouts are compromised , but I am adamant about keeping up my workouts. I'm only going to be on Orgovyx for 6 months. Supposedly , the benefit of Orgovyx is that the body recovers more quickly.

Jump to this post

Both Orgovyx (and Firmagon) have quicker recoveries from low testosterone than the other injectables (Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, or Decapeptyl) due to their different mechanisms of action. With those other injectables, expect 50% more time of side-effects than the injection was planned for; with Orgovyx (and Firmagon), side-effects often subside in a matter of weeks.

REPLY
@garyv

I have been on Orgovyx for six months. My Radiation Oncologist is doing the second process of High-Density Radiation HDR is telling me that after the last treatment of HDR on the 23rd of May I can stop using Orgovyx . He stated six to seven months is the max to use it. I have had two other radiation Oncologists say the same "six to seven months" max.
However, a General Oncologist told me two years. Mmmm I am going to stop taking it on the 23rd.
I think their main concern is the damage to my bones. I am 76.
A little backup info in 2019 I went through 45 external beam radiation treatments and was on Lupron. The cancer came back a few years ago so the HDR treatment is now being done. I chose the HDR because of the higher percentage of success. 90 to 95% success with HDR vs 80 to 85% External Beam Radiation.
My old urologist had recommended the external beam back in 2019. I will never see him again because he recommended Cryotherapy this time around. almost nobody uses cryotherapy anymore.
I believe that an Oncologist "trumps" whatever a urologist suggests. If you have cancer listen to or see a cancer doctor.
"Positive Attitude" is very important!! as previously stated!

Jump to this post

Gary, wishing you all the best from this treatment regimen. I just finished my only RT series of 44 treatments and have been prescribed Orgovyx for 24 months by my oncology team. I'm almost at six months and the side effects continue to be severe. I hope to convince the team to let me alter the plan to a shorter time. My PSA was 6 last fall, Gleason 7, N1M0 from PET. PSA immediately after RT was .11.

REPLY

I'm at six months on Orgovyx and I've had every side effect listed on the Orgovyx website other than constipation. Fatigue, ED, and hot flashes are I suppose the most troublesome. I exercise daily with added resistance training to reduce muscle mass loss, try to stay busy, am moving toward plant-based diet and anything else I can think of or is recommended for lessening side effects or combating the cancer.

REPLY
@colm

I have just been put on Orgovyx , I was diagnosed in February and not seen an Oncologist yet. Trying to find out what to expect and to find out how well Orgovyx holds back the progression. I am fortunate that my PC is contained in my Prostrate. Any info would be greatly appreciated.

Jump to this post

I have experienced all the "common" and "other" side effects except constipation, and I have been on Orgovyx five months. With this med and 44 radiation treatments during February-April, my PSA has dropped from 6 to .11. I have more tests this week and anticipate the PSA will continue to drop. The system here won't let me post the link, but if you'll go to Orgovyx dot com and click the "About" tab, the last item is "side effects."

REPLY
Please sign in or register to post a reply.