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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Profile picture for dke @dke

Hey Jim,
I have also been on Orgovyx for 9 months. For a few months the side effects were mild. However, they have become severe especially the hot flashes. I’m 76 years old and don’t drink alcohol, smoke or eat poorly. I exercise for at least an hour every day…walking, biking and resistance training. Lately it has become a struggle to get through a workout. On my daily walk I find it difficult to complete a mile without getting severe hot flashes. I actually have short blackouts when I sit to try and recover. The hot flashes drain my energy and I end up sleeping a lot. I rarely get a solid night’s sleep without multiple hot flashes. Yes. I have tried most every recommended solution but nothing seems to work. I refuse to add another drug to fight the side effects of Orgovyx. I realize every one is different and reacts differently. I stopped taking Orgovyx six days ago and feel better already. On Monday I’m telling my Urologist I’m done taking it. I’m sure he will not be happy. I will monitor my PSA and testosterone levels and see what happens. After looking at the research on ADT and prostate cancer I’m not convinced that two years of testosterone lowering drugs is the answer. Quality of life is my concern. At 76 I would rather have a few good years than go through this process without any guarantees of reoccurring prostate cancel. Thanks for your comment.

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I empathize with you. Quality of life, often, seems to be kicked to the side of the road.

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Profile picture for ronjc @ronjc

Sorry I didn't give you the whole story... after the removal of the prostate, we tested my PSA and it was still at 2.4 that's when we did a PET and found cancerous cells in the area the prostate had been, but nowhere else, so he scheduled the radiation. I got the Eligard shot in june, 2 months after the surgery. Do I still need another shot?

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Your cancer had already gotten out of the prostate. It’s almost definitely in your bloodstream and will reappear in bones or tissue at a later time. Staying on ADT is your way of delaying that return.

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Profile picture for jime51 @jime51

I was doing almost 90 min of exercise daily, and am now splitting it into 40 min “A-B” days with cardio MWF and stretching/walking/balance TTH. I’ve only done this a few weeks but it seems to be leaving a little more energy for the rest of the day. I plan to take Orgovyx for at least one year, hoping to be allowed to change to Nubeqa for six months and then take a holiday. At 74, I don’t think I can tolerate two years either and life afterward be worth continuing. Wishing you the best.

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I’m also 74. Some days I feel like 20 and some days like 200. It’s all part of the journey. As Nietzsche said: “What doesn’t kill me makes me stronger”. He also said “A day without dancing is a day wasted”. Don’t forget to dance, and maybe also sing 🎵

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Profile picture for gkgdawg @gkgdawg

How do you know when you are rid of the cancer?

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You don’t. I’ll settle for no symptoms. All you can do is keep a positive attitude and fill every day with love, laughter and all the things that make you happy. I may have two years left, and I may have 20. This is a wake-up call to really live the present moment fully. Not in an anxious grabby way, but in a relaxed happy way.

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Yes, that is what ADT does to people. Orgovix is no different and had additional side effects with me. One hard to live with was very frequent urination even at night. The unreliable delivery by Fedex also became unbearable. I went back to Eligard. After 10 years, my cancer has moved on to spine and other bones and soft tissue. Wishing you better success than I.

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Profile picture for duberdicus @duberdicus

Yes, that is what ADT does to people. Orgovix is no different and had additional side effects with me. One hard to live with was very frequent urination even at night. The unreliable delivery by Fedex also became unbearable. I went back to Eligard. After 10 years, my cancer has moved on to spine and other bones and soft tissue. Wishing you better success than I.

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Just a note that after nine years of ADT, I never have had Frequent urination at night. I almost never get up more than once a night. I’m not mentioning this to you directly just for other people to understand. The problem is not consistent with everyone..

It’s too bad to hear that the delivery you’re receiving is unreliable. My Orgovyx and Nubeqa orders come through UPS and they usually come Two days after I order. Everything else comes by a USPS.

The biggest delay is the pharmacy not the delivery service.

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Hello, I'm new here but not new to prostate cancer. I was treated at Northside Hospital in Atlanta. MRimage high dosage, 5 treatments. My Gleason scores were, out of 20, 6 samples 3/4 and 1 at 4/3 with no metastization. I received a 3 month shot of Elegard 45 days prior to starting my treatment which concluded on June 19th of this year. I have not received any further ADT since that first shot. I spoke with a couple highly regarded oncologist who said that at my age, 70, taking ADT may not be a great idea considering my conditions. Unfortunately I got this info after I received the shot. In August I had my first PSA test which was: .02. I plan on testing every 3 months for the first 2 years. I see where others are taking supplements however my oncologist did not recommend. I'd be interested in hearing what others think about what I've said and about the supplements as well. Thanks

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ADT is used before radiation because it can stop the cancer from growing, Actually reduce the size of the tumors and stop it from spreading.

I was given a six month shot before my radiation, But mine was 7+ weeks of salvage radiation not SBRT for five days. At the time, I didn’t realize what Lupron would do and had no side effects from it at all. My brother was given a six-month shot before his five days of SBRT. He was 75 at the time and it caused him no noticeable problems other than hot flashes.

I’ve been on ADT for nine years and I’m 77 now.

it would make more sense that the reason they did not recommend you be on ADT was because you only were a Gleason seven (4+3 Is your actual Gleason score the other numbers don’t matter). I was a Gleason 4+3 and After surgery, I didn’t have any ADT, I was 62 and it took 3 1/2 years before my PSA started rising and I needed to have salvage radiation. At that time, they did not follow up with another lupron shot. I didn’t go on Lupron until 2 1/2 years later when my PSA started rising again.

So if you do have a reoccurrence and your PSA starts to rise again, they undoubtedly will put you on ADT.

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Profile picture for dranible @dranible

Hello, I'm new here but not new to prostate cancer. I was treated at Northside Hospital in Atlanta. MRimage high dosage, 5 treatments. My Gleason scores were, out of 20, 6 samples 3/4 and 1 at 4/3 with no metastization. I received a 3 month shot of Elegard 45 days prior to starting my treatment which concluded on June 19th of this year. I have not received any further ADT since that first shot. I spoke with a couple highly regarded oncologist who said that at my age, 70, taking ADT may not be a great idea considering my conditions. Unfortunately I got this info after I received the shot. In August I had my first PSA test which was: .02. I plan on testing every 3 months for the first 2 years. I see where others are taking supplements however my oncologist did not recommend. I'd be interested in hearing what others think about what I've said and about the supplements as well. Thanks

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I am a big believer in Turkey Tail mushroom (tea or capsules). I started a thread about my experience with it elsewhere on this site. See:
https://connect.mayoclinic.org/discussion/turkey-tail-mushrooms-and-fos-anyone-else-here-use-these/

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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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@madpuppy74 I was on Lupron and Abiraterone for three years. I have been off for one year. I am still enjoying all the side effects, although my testosterone is slowly coming back.

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