TO TAKE OR NOT TAKE ORGYVYX HORMONE W... - Prostate Cancer N...

Prostate Cancer Network

5,258 members3,324 posts

TO TAKE OR NOT TAKE ORGYVYX HORMONE WITH CARDIAC PROBLEMS.

JWS13 profile image
14 Replies

I am scheduled for SBRT on 1/12/ 23 at UCLA. They are recommending 4 months of ORGYVYX/Regulix.(ADT HORMONE) (I have Afib , and other CARDIAC comorbidities. ...)

The Decision whether to take the 4 months of hormones is driving me nuts! (analysis/paralysis) .

I am concerned that if I don't take it, I may be good for 5 years and then there is a 10% increase in my recurrence rate to 30 % because I did not do the Hormone.

I have researched the "salvage " treatments currently available after recurrence(Cryo, Hifu, HDR Brachy) and all of them are flawed (50% failure rate)...

Which means if I don't take the Hormones now for 4 months , I could be on Hormones 5 years from now for the rest of my life, EXACTLY WHAT I WAS TRYING TO AVOID.

I am SPECIFICALLY asking has anyone who has taken Hormone therapy has had ANY TYPE OF ACTUAL CARDIAC SIDE EFFECT , (i.e afib, heart attack, arrythmia, etc. ) or mostly other SE's.

I have not seen anyone post with a Cardiac Side Effect from Hormone Therapy ???

This will help very much ...Thanks to you all and Happy Holidays!!

68 Gleason7 (4+3 ) , PSA 10

Written by
JWS13 profile image
JWS13
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Tall_Allen profile image
Tall_Allen

I assume you are taking a blood thinner. The numbers are small -- Fatal and non-fatal myocardial infarction and stroke were reported in 2.7% of patients receiving ORGOVYX. Why not ask your cardiologist?

JWS13 profile image
JWS13 in reply toTall_Allen

I did yesterday and he says he has no data on it that would be helpful...it's too ambiguous..too many individual variations..he indicated that the SE pamphlet is CYA and he did not find specific trials on ORGOVYX...

Vynbal profile image
Vynbal

I was diagnosed with PCa in April 2021. I also have Brugada syndrome, a genetic cardiac sodium channel defect that can lead to fatal arrhythmia. When I started 6 months of ADT, it was with Orgovyx, with weekly EKGs, looking for dangerous changes. We (me and my medical team) were prepared to stop the Orgovyx if necessary. The QT interval noticably lengthened, but stayed in the safe range. I completed 6 months with no cardiac incidents.

Mike404 profile image
Mike404

I’m four months into a six month run of Orgovyx. I’m diabetic, but no specific cardiac issues. No side effects from the ADT. My T level is at 12, less than an old lady’s, and my PSA is undetectable. Also SBRT at UCLA. It’s been a non issue for me and well worth the possible benefits you point out. Better a short run now than a long run later.

maley2711 profile image
maley2711

I will add that the success rate may be lower, but SBRT without ADT will still have a good success rate.......and the 50% failure rate for salvage is also a 50% success rate.. I would just guess any enhanced cardiac problems with Orgovyxx are similar to those seen with Firmagon, etc. There are studies on cardiac issues when using the other ADT options. As I recall , the problem is very small, but not zero....eg 1%? Google or Pubmed should help find studies for you. Lucky is the man who is only asked to tolerate ADT for 4 months....best luck with your treatment.

Murph256 profile image
Murph256

I had a heart attack in July of 2020 and had three stents put in. And I’ve been on and off ADT for four years now, including a 12 month stint on Orgovyx that ended earlier this month. I’m sure the Orgovyx is not good for my heart, but I go in for biannual EKGs, along with periodic echocardiograms and stress tests. My cardiologist never seems too concerned. I did drop my Brilinta prescription as it’s a blood thinner. But my platelets are already low at 116 due to my EBRT, so I had no need for a blood thinner. I will say this, the Orgovyx seems to have milder side effects than the Lupron I was on several years ago, including a milder effect on my heart, I hope. Life is a balancing act. Currently, I feel my PC is a greater concern than my heart condition. Good Luck!

Scooter22 profile image
Scooter22

Intermediate unfavorable, psa 19. Determined to be localized. Began Orgovyx in Oct. 2021, 4 wks. b4 my 1st sbrt treatment. Sbrt treatments ended right b4 Thanksgiving 2021. My MO recommends 2 yrs. of adt for my level of disease. We had a discussion about ending the adt at the 18 mo. interval but I’ve decided to go ahead and do the 2 yrs.. I’m sure I’d regret it if there’s a reoccurrence. Orgovyx is not that bad FOR ME. I’m an exerciser & always have been. I walk every day & lift every other day. As long as I’m busy & active I feel pretty good. That said, I’m looking forward to getting off it as I’ve lost strength & I do worry about the secondary effects of the adt. My lipid panel did elevate but I’ve begun a botanical supplement regimen that is bringing those numbers down.

JWS13 profile image
JWS13 in reply toScooter22

Thanks for response...what is a "botanical supplement regimen"that brings cholesterol down?

in reply toJWS13

Maybe berberine? Supposed to be similar to metformin. Me? I asked for and got a metformin prescription. Others here will argue, but supposed to be beneficial in suppressing prostate cancer.

Scooter22 profile image
Scooter22

I take quite a few things- Quality fish oil, Berberine, Heart Savior, baby aspirin, magnesium.

Teacherdude72 profile image
Teacherdude72

Since G9 diagnosis in 2015 I have been on Lupron twice. First time 24 months and now since aprox 2 years ago. I am also on Nubeqa this time. No mets.

No heart issues! Never smoked nor heavy drinker. over weight. Losartan and Eloquis.

Read,ask questions of your medical team and monitor often.

Be well and enjoy life.

I have a long history with a-fib. I took meds for it for many years. In the time I had my six-month eligard shot I had zero episodes. None. My heart behaved better on eligard. Your experience might be different but I wanted to relate my experience. That was six years ago. Two years ago I had a-fib ablation surgery after the meds I was taking failed to prevent episodes and Covid was threatening too. So I had a serious case of a-fib.

JWS13 profile image
JWS13 in reply to

did u have an ablation? was it successful?

in reply toJWS13

Yes the ablation was successful. Done here in Phoenix.

Not what you're looking for?

You may also like...

Looking for hormone side effects

Diagnosed 5 Oct, PSA 11, biopsy 12 cores, all positive. Lowest Gleason 6 (3+3), remaining 11 a mix...
no5ole profile image

Atrial Fibrillation & Implantation of Fiducials & Spaceoar at UCLA.

I am presently setting up a new date for Spaceoar, Fiducials , and SBRT under IV SEDATION at...
JWS13 profile image

ECE and CRIBRIFORM FOUND IN PATH REVIEW OF MSK BIOPSY BY UCSF

I am scheduled for SBRT at UCLA for 1/12/ 2023. However , UCSF did a path review of MSK's Biopsy...
JWS13 profile image

Ultrahypofractional RT and ADT for Int. Risk PC

I am a 60 year old recently diagnosed PC with a PSA of 11.3 and ultra sound biopsy grade cT1c...

Should you have hormone therapy along with radiation?

A useful video about this was cited in a Urology Practice Update email. The video is here:...
AlanMeyer profile image
Moderator

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.