Hormone Therapy

Posted by MaxC @cobratk, Jul 2 9:36pm

I am getting ready to start hormone therapy with orgovyx and have read that it can cause brain fog. Can anyone who has experienced this tell me how bad it is. My wife has memory issues and can’t help out driving me to radiation treatments or cooking. I am concerned this make it difficult to keep up with my treatments, so I have not committed to hormone therapy in my mind just yet.

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Profile picture for ga73ds @ga73ds

What ADT treatments are you on?

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I was on Lupron from 4/2017 to 02/2024 then on Orgovyx since then. Because I had been on ADT so long, but My oncologist and I figured that stopping it probably wouldn’t raise my testosterone since I had been on it so long. My testosterone started coming back at a very fast pace so back on Orgovyx after six months.

ADT does one major thing, Reduces your testosterone to below 20, And in many cases much lower.

That causes the list of side effects that you’ve seen. It doesn’t vary from one version of ADT to another. All ADT does essentially the same thing.

When I started Orgovyx my hot flashes stopped for about five months, They’ve come back just as aggressive as ever.

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Profile picture for pjsatz @pjsatz

Have been on Orgovyx for 3 months which has been keeping my testosterone below 10 and psa was at .37 on 6/23, down from 31 before starting Orgovyx. I am T1cN1M0, Gleason 8, am relatively low volume, but have some high risk cell patterns. I have 2 pelvic nodes positive, second one was barely visible, am still considered localized. Will start 28 visits of radiation this week. I may need to also go on a second medicine in the form of Yonsa (micronized abiraterone) or Xtandi or Nubeqa. I had a bad reaction to abiraterone. If I don’t tolerate Yonsa am not sure about adding a receptor blocker this early in the process.

Thank you,

Phil

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Abiraterone definitely isn’t the friend of the person using it. Causes a lot of side effects. I was on it for 2 1/2 years and the only advantage I can think is that it gave me 2 1/2 more years before I moved on to Nubeqa.

If Yonsa works for you That would be good to know. Please come back and tell us what happened after your trying it out.

If you’re going to have to pick a second drug to replace abiraterone the best one is Nubeqa. All of the lutamides essentially have the same results, nubeqa has the least amount of side effects of any of them. I’ve been on it almost 2 years and I’ve been undetectable for 19 months, When I took abiraterone I was only undetectable one month out of 2 1/2 years.

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Profile picture for jeff Marchi @jeffmarc

Abiraterone definitely isn’t the friend of the person using it. Causes a lot of side effects. I was on it for 2 1/2 years and the only advantage I can think is that it gave me 2 1/2 more years before I moved on to Nubeqa.

If Yonsa works for you That would be good to know. Please come back and tell us what happened after your trying it out.

If you’re going to have to pick a second drug to replace abiraterone the best one is Nubeqa. All of the lutamides essentially have the same results, nubeqa has the least amount of side effects of any of them. I’ve been on it almost 2 years and I’ve been undetectable for 19 months, When I took abiraterone I was only undetectable one month out of 2 1/2 years.

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With more sensitive scans these days patients should be getting more complete radiation than in the original trial that established abirateone. Maybe the benefit of abiraterone could be more redundant or less additive, I don’t know.

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Profile picture for pjsatz @pjsatz

With more sensitive scans these days patients should be getting more complete radiation than in the original trial that established abirateone. Maybe the benefit of abiraterone could be more redundant or less additive, I don’t know.

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You still people with advanced prostate cancer, Unfortunately, radiation doesn’t kill it all for everyone.

Abiraterone will remain around unless they can find a way to keep prostate cancer from growing,, even though you have testosterone. Or they finding some other better way? It really does have a purpose.

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Anyone experienced severe rash in genital area after 40 days on Erleada and 30 days on Lupron. They stopped Erleada and are treating it as shingles or herpes with an anti viral drug for 10 days.

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Profile picture for reb1200 @reb1200

Anyone experienced severe rash in genital area after 40 days on Erleada and 30 days on Lupron. They stopped Erleada and are treating it as shingles or herpes with an anti viral drug for 10 days.

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Are you having incontinence issues and wearing a pad? You could be allergic to your own urine and that could be what’s causing the problem. It could be something in the drugs that’s causing this issue.

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Profile picture for jeff Marchi @jeffmarc

Are you having incontinence issues and wearing a pad? You could be allergic to your own urine and that could be what’s causing the problem. It could be something in the drugs that’s causing this issue.

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No incontinence or pad. Started hormone therapy June 1 with degaralix injection on both sides of lower abdomen. Week later started Erleada pills. Had Lupron injection in right butt 1 month ago. I have stage 4 metastatic prostate cancer into lymph nodes and bones. Was super active 85 year old until this happened.

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Profile picture for brianjarvis @brianjarvis

All ADT hormone therapies might cause brain fog.
But, you’re more likely to experience hot flashes, night sweats, weight gain, muscle atrophy, loss of strength and endurance, loss of libido, possibly ED, mood swings, emotions, and fatigue - all symptoms that are often related to menopause.
Yes, there may also be forgetfulness, confusion, brain fog, memory loss, insomnia, etc., but nothing that’s debilitating.
There are ways to minimize most of those ADT side-effects,

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Low dose estrogen therapy can mitigate most side effects of ATD BUT SOMEHOW NOBODY ON THE FORUM TALKS ABOUT IT

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Profile picture for ga73ds @ga73ds

5 years? Wow. I've been on Orgovyx 2 1/2 yrs. My doctors want me to come off it.

I've had surgery, radiation, and ADT. PSA < 0.01 for over 2 years. I was Gleason 9, Decipher .99 so aggressive.

I've got a small lung nodule < 6mm and stable. Probably not cancer but I'm afraid if I stop the Orgovyx it might start to increase.

I've experienced muscle weakness, joint pain, and overall tiredness-- don't know if this is due to the Orgovyx or not. I'm scared to stop taking it.

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How bad are in side effects? I hear that it makes people weak, nauseous, etc. How old are you?

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Profile picture for ashok2 @ashok2

Low dose estrogen therapy can mitigate most side effects of ATD BUT SOMEHOW NOBODY ON THE FORUM TALKS ABOUT IT

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That’s true. But, when you take a pharmaceutical to offset the side-effects of a pharmaceutical, there’s the risk of additional side-effects to possibly have to deal with.

Why not try the simplest approach first…..exercise. Then, if that doesn’t work, try other alternatives.

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