Now I'm on Xtandi. What to expect?

Posted by bluegill @bluegill, May 23, 2025

If you think I should enjoy any side effects as a surprise (just like Christmas presents!), then don't reply to this post.

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

Here’s what to look out for (see attached).

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Dang, I was already dumb and tired before I started taking it.

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no side effects on my father - 12 days now

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Day 2. I'm a little more tired, a little dizzier, but nothing drastic.

There is one surprise bonus: vivid dreams. I dreampt about my bedroom as a child, with surprising details. Then I woke up. 🙁

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I am starting my first Xtandi tonight. I had prostate removal surgery 17 years ago. I was good for a few years then PSA increased. Had radiation. Good again for a while. Then PSA up again. Lupron every six months for a couple of years. PSA went down then back up. Now have stage 4 prostate cancer that migrated to one rib. I’m dreading the side effects I read about with Xtandi.

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Profile picture for ralphie82 @ralphie82

I am starting my first Xtandi tonight. I had prostate removal surgery 17 years ago. I was good for a few years then PSA increased. Had radiation. Good again for a while. Then PSA up again. Lupron every six months for a couple of years. PSA went down then back up. Now have stage 4 prostate cancer that migrated to one rib. I’m dreading the side effects I read about with Xtandi.

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@ralphie82
My situation is similar to yours.

2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a 6 month Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 32 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 3 years ago. I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.

Not sure if you are in the United States, but if so, you should try to get Darolutamide (Nubeqa). It works just as well as Xtandi, but doesn’t have the side effects. Most people have no side effects at all, including me.

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Thanks for your reply! Yes I am in the United States. Very similar situations for sure. I think it is all a guessing game and if we do get the answer it’s only by chance. “No Side Effects” would be great!

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Profile picture for ralphie82 @ralphie82

Thanks for your reply! Yes I am in the United States. Very similar situations for sure. I think it is all a guessing game and if we do get the answer it’s only by chance. “No Side Effects” would be great!

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@ralphie82
I know at least a couple of dozen people that have started using Darolutamide And found it to be superior. If you attend an ancan.org.org Advanced past cancer meeting you can find out a lot more and they can also help you with suggestions for your treatment. They’re doing it for 15 years. There’s always a few doctors in the meetings.

I’m including a slide from a PCF meeting yesterday that covered the ASCO conference.

You will note at the bottom there is a section that shows that 30 people switched from Enzalutamide to Darolutamide But none switched the other way.

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Thanks for that info Jeff! Very interesting.

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