Has anyone gone off hormone therapy (ADT) after radiation?

Posted by gkgdawg @gkgdawg, Sep 2 11:42am

My husband has completed 5 weeks of radiation and 4 months of hormone therapy, 3.5 months ADT. His PSA is less than .2 The doctor seems pleased with the PSA and is hoping that it will soon be undetectable. If he gets to that point, can he take a break from hormone therapy and ADT. He gets his next hormone shot in October. I am hoping he will get Orgovyx , instead of the Elegard. I hate that the hormone therapy has impacted his muscle and bone density. He looks smaller to me. He is trying to do weights and he is signed up for a weight room next month, when we return home from our summer holiday. I would appreciate any input

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You have not included the most important number, the Gleason score they came up with After his biopsy. That is critical information when you decide how to stop hormone therapy. If his Gleason score is higher than a seven, then he should be on ADT for at least 18 months.

Hormone therapy is ADT so I’m puzzled as to why you say 3 1/2 months of ADT but four months of hormone therapy since they are Usually the same, Unless you are referring to him being on Zytiga, Which acts like hormone therapy.

Orgovyx and Eligard both do exactly the same thing, Lower testosterone. I’ve been on both for many years and there was no side effect difference when I switched to Orgovyx (I switched to save $1600). The low muscle and bone density problems are from low testosterone not the specific drug. You need to do the weight training and keep steady exercising like walking every day as well. I walk on the track twice a day about a mile each time and I go to the gym about three times a week for weight training. I’ve been on ADT for almost 9 years. If you stay on ADT, you should also get bone strengtheners Like Fosamax, Zometa or Xgeva. A bone doctor at a recent convention, said that It was essential to use bone strengtheners while on ADT.

It can take years for some people’s PSA To reach bottom after radiation. Staying on ADT can help getting it down quicker.

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In brief, I have seemingly been exposed to similar protocols. I had Prostatectomy, requisite node removal on the surgical side. Then 38 days of radiation. I was scheduled for 6 injections of 12-week spans Lupron injections, however I declined on the 6th injection with no objection from my doctor as I had been at 0.064 PSA and achieving 5% testosterone levels during treatment. I am 74 and in fairly good physical condition, at least going into this experience 2 years ago. I am cancer free and grateful for that, but the devastation I have suffered from the Lupron has been devastating. I was led to believe that shortly after my June 18th appt and release from this dreadful drug, that I would have relief from the dreadful side effects of this drug. To name a few, the constant Hot Flashes/relentless sweats, muscle and joint pain/cramping, no indication of returning male potency, mental fog and memory issues, writers block, speech impairment, continuing strength issues inhibiting normal exercise routines, you get the picture. .... seems the disease is defeated but the cure is hell-bent on killing me.
So glad I ceased the treatment schedule when I did, but I remain devastated by the ongoing disabilities arising from this medical protocol. The doctor in no way led me to believe that I wouldn't immediately start to feel the effects of the drug wearing off. I read on this site where a patient was still feeling the effects after 2 Years post-treatment. I don't know that I can make it. Thoughts would be appreciated.

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Profile picture for madpuppy74 @madpuppy74

In brief, I have seemingly been exposed to similar protocols. I had Prostatectomy, requisite node removal on the surgical side. Then 38 days of radiation. I was scheduled for 6 injections of 12-week spans Lupron injections, however I declined on the 6th injection with no objection from my doctor as I had been at 0.064 PSA and achieving 5% testosterone levels during treatment. I am 74 and in fairly good physical condition, at least going into this experience 2 years ago. I am cancer free and grateful for that, but the devastation I have suffered from the Lupron has been devastating. I was led to believe that shortly after my June 18th appt and release from this dreadful drug, that I would have relief from the dreadful side effects of this drug. To name a few, the constant Hot Flashes/relentless sweats, muscle and joint pain/cramping, no indication of returning male potency, mental fog and memory issues, writers block, speech impairment, continuing strength issues inhibiting normal exercise routines, you get the picture. .... seems the disease is defeated but the cure is hell-bent on killing me.
So glad I ceased the treatment schedule when I did, but I remain devastated by the ongoing disabilities arising from this medical protocol. The doctor in no way led me to believe that I wouldn't immediately start to feel the effects of the drug wearing off. I read on this site where a patient was still feeling the effects after 2 Years post-treatment. I don't know that I can make it. Thoughts would be appreciated.

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One critical piece of information you didn’t include is what was your Gleason Score. That decides how long you should be on ADT. Another thing is what was your PSA at diagnosis?

To find out how quickly you are getting out of the hot flashes And other issues you need to have your testosterone checked regularly. Once it hits a 150-200 those problems will probably go away. How long it takes depends on how long you were on Lupron, And the older you are the longer it usually takes.

I’ve been on ADT for almost 9 years, Lupron for over 6 years. I go to the track across the street twice a day and walk a mile every day. I go to the gym three times a week and do weight training. That’s how you keep your muscles stable.

Yes, ADT can cause brain fog, I experience it every day, but I work around it by looking things up or using different words for what I want to say.

Another thing you haven’t mentioned is what was found in your biopsy. There are many different things that can make your cancer very aggressive like intraductal, cribriform, Seminal vesicle invasion or ECE/EPE. Were any of those found in your biopsy?

I have an embrlabs.com wave product (wave 2). I’ve used it for Over five 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. 60 day moneyback guarantee at embrLabs
https://embrlabs.com/

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My husband's Gleason score was 7 (4 plus 3). According to the PSMA , he has about 5 cancer spots in his lymph nodes. He has never ad hot flashes. He says he thinks he has brain fog; in the morning it takes a bit to kind of clear his head. According to a blood test last week, his testosterone is less than .2. Same with his PSA. Biopsy in Sept 2024 said left base prostatic adenocarcinoma Grade 4. Rt. middle zone prostatic cancer Group 2, 3 +4; Cribiform absent Intraductal Absent, Cancer 3/23 cores . Periprostatic fat absent. cancer 3 % of all core tissues. The urologist said that we had caught it early; no worries. The earliest we could get to an oncologist was 6 months later. By that time, we had an MRI and paid for our own PSMA - The PSMA showed Metastases to left internal iliac/perirectal lymph node; Right internal iliac lymph node by vas deferens; Enlarging 14mm internal iliac/right pelvic sidewall lymph node; Enlarging right junctional iliac lymph node; Right external iliac lymph node; common ilic lymph node; left common iliac lymph node; retroaortic triangular lymph node; elongate left pelvic sidewall/internal iliac lymph node; left junctional iliac lymph node metastesis. He has been on Elegard (first injection May 15 2025); and Abiraterone and Prednisone June 1st. .

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Profile picture for jeff Marchi @jeffmarc

You have not included the most important number, the Gleason score they came up with After his biopsy. That is critical information when you decide how to stop hormone therapy. If his Gleason score is higher than a seven, then he should be on ADT for at least 18 months.

Hormone therapy is ADT so I’m puzzled as to why you say 3 1/2 months of ADT but four months of hormone therapy since they are Usually the same, Unless you are referring to him being on Zytiga, Which acts like hormone therapy.

Orgovyx and Eligard both do exactly the same thing, Lower testosterone. I’ve been on both for many years and there was no side effect difference when I switched to Orgovyx (I switched to save $1600). The low muscle and bone density problems are from low testosterone not the specific drug. You need to do the weight training and keep steady exercising like walking every day as well. I walk on the track twice a day about a mile each time and I go to the gym about three times a week for weight training. I’ve been on ADT for almost 9 years. If you stay on ADT, you should also get bone strengtheners Like Fosamax, Zometa or Xgeva. A bone doctor at a recent convention, said that It was essential to use bone strengtheners while on ADT.

It can take years for some people’s PSA To reach bottom after radiation. Staying on ADT can help getting it down quicker.

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I hadn't heard of the bone medication. I will look it up and speak to the doctor about it.

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Well, from what you described he was diagnosed with De Novo Advanced Prostate Cancer.

You do not mention surgery, so I gather the radiation is to the prostate and the ADT is systemic treatment.

It may be that at some point, he can come off the systemic therapy...as @jeffmarc says, that point is not six months, 18-24 is generally what the guidelines say, some may suggest 36 though less and less do I see that in clinical trials.

Did his medical team discuss adding an ARI, normally with his diagnosis they do.

As to which ADT, in general, they do the same thing, lower testosterone. The mechanism by which they do and the delivery, shot vs oral, can vary. I have seen many complain about the firmagon injections and the soreness surrounding them, The Lupron injections can be done on one, three or six month intervals. Orgovyx is an oral ADT and has a lower CV side effect profile , no flare, higher sustained castration and faster recovery of T when stopping but requires discipline to take every day and there may be insurance issues, approval or financial toxicity,

There is a lot of discussion about "intermittent ADT (IADT). You may not find consensus in the medical community about it. Generally, the discussion revolves around "who" can and should do it, can it delay time to castrate resistance, is there a difference in overall survival between it and continuous, if he and his medical team decide to do it, how long is the "break?" The length of the break can be critical if one is seeking "relief" from the side effects of ADT since it can take some time for T to recover and if the break is only a few months, well, depending on things like baseline T, age, which ADT agent, lifestyle, T may not recover to where he sees any relief .

As to the side effects of ADT, what you describe is welk within the "normal." The mitigating strategies that are under his control (all in moderation...):
Diet
Exercise - cardio and resistance
Managing Stress

More and more I see literature that discusses how quickly one's PSA drops to "undetectable" as an piece of clinical data showing a good response to treatment and one of the criteria for at some point, coming off treatment. So, from what you describe, your husband is off to a good start, In the EMBVARK trial those who achieved a PSA nadir like that by nine months were taken off treatment i believe and actively monitored - https://www.urotoday.com/conference-highlights/aua-2023/aua-2023-prostate-cancer/144012-aua-2023-embark-a-phase-3-randomized-study-of-enzalutamide-or-placebo-plus-leuprolide-acetate-and-enzalutamide-monotherapy-in-high-risk-biochemically-recurrent-prostate-cancer.html

Keep in mind, EMBARK was for metachronous, not de novo PCa,

Anyway, discuss with his medical team nut my guess is they will recommend 18-24 months and then decide.

Kevin

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Thank you so much, Kevin. You have so much information. I am going to have to look some things up, such as De Novo Advanced Prostate Cancer. Also, ARI. I am not sure what that is. His treatment right now is hormone shots every 6 months (previously Elegard,). I am hoping that he can have Orgovyx in October, instead. I asked the medical oncologist about it and she looked into it and said it has been approved in Canada and, hopefully, that will be his treatment in October, instead of the Elegard. He is also on Zytiga (Abiraterone) and Prednisone. I am encouraging exercise. He has always been one to walk regularly, about 7 km each time. He likes to golf and always walked the course. But, recently, he hasn't golfed as much (5 weeks of radiation interrupted that) and he has started riding in a cart in the heat. Also, he is not feeling as strong, and is embarrassed golfing with his friends. He is discouraged and is considering not golfing for the rest of the summer. I am hoping he will reconsider; I think his friends will understand about his golf but more importantly, I think he needs the social part of the golf.

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Profile picture for gkgdawg @gkgdawg

Thank you so much, Kevin. You have so much information. I am going to have to look some things up, such as De Novo Advanced Prostate Cancer. Also, ARI. I am not sure what that is. His treatment right now is hormone shots every 6 months (previously Elegard,). I am hoping that he can have Orgovyx in October, instead. I asked the medical oncologist about it and she looked into it and said it has been approved in Canada and, hopefully, that will be his treatment in October, instead of the Elegard. He is also on Zytiga (Abiraterone) and Prednisone. I am encouraging exercise. He has always been one to walk regularly, about 7 km each time. He likes to golf and always walked the course. But, recently, he hasn't golfed as much (5 weeks of radiation interrupted that) and he has started riding in a cart in the heat. Also, he is not feeling as strong, and is embarrassed golfing with his friends. He is discouraged and is considering not golfing for the rest of the summer. I am hoping he will reconsider; I think his friends will understand about his golf but more importantly, I think he needs the social part of the golf.

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I finished 5 weeks IMRT + one HDR brachytherapy procedure and six months Orgovyx ADT pills about two months ago. The only real residual side effects are night time urinary frequency and fatigue that almost always hits me on the golf course on very hot 85 degree + days.

It is my understanding that these residual side effects are a result of the radiation and the Orgovyx ADT regimen. I am told exercise and patience are important as most side effects resolve w/in 6-12 months

I can empathize with your situation. Best of luck going forward!

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Profile picture for gkgdawg @gkgdawg

Thank you so much, Kevin. You have so much information. I am going to have to look some things up, such as De Novo Advanced Prostate Cancer. Also, ARI. I am not sure what that is. His treatment right now is hormone shots every 6 months (previously Elegard,). I am hoping that he can have Orgovyx in October, instead. I asked the medical oncologist about it and she looked into it and said it has been approved in Canada and, hopefully, that will be his treatment in October, instead of the Elegard. He is also on Zytiga (Abiraterone) and Prednisone. I am encouraging exercise. He has always been one to walk regularly, about 7 km each time. He likes to golf and always walked the course. But, recently, he hasn't golfed as much (5 weeks of radiation interrupted that) and he has started riding in a cart in the heat. Also, he is not feeling as strong, and is embarrassed golfing with his friends. He is discouraged and is considering not golfing for the rest of the summer. I am hoping he will reconsider; I think his friends will understand about his golf but more importantly, I think he needs the social part of the golf.

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Tell him he's not alone in the golf game going south. I'm an avid golfer and Eligard has definitely taken a toll. I'm at least one club shorter than I was. My advise is to go to the range and keep at it. Don't stop. And also, I agree with you - the social part is a HUGE help.

Best of luck to the both of you!
Doug

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I have been on ADT therapy (eligard) for over 8 years with a pause for one year on the beginning after being on it a year. Xtandi was added to the mix 2 years ago. Looking back at my kidney data, I began losing egfr within 3 months of starting xtandi. At first we thought that my loss in fitration rate was due to blood pressure meds, so we dumped the ones I was taking but my egfr kept dropping and is now 12% or so. We stopped the eligard 3 months ago but that didn’t help restore kidney filtration . Has anyone else seen or had a suspicion that xtandi may damage kidney function?

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