1. < Prostate Cancer

Enzalutamide (Xtandi): Anyone have experience with this drug?

Posted by dakotarunner @dakotarunner, Feb 3, 2023

RP in 2004. Over the past few years PSA has been rising. On Lupron for the last 12+ months. Bone scan in Jan of 2022 indicated cancer has spread to pelvic area bones. Bone scan in Jan of 2023 indicates it is slowly spr3eading.Dr. is putting me on Xtandi next week. I am curious if anyone out there has been on this drug. Sounds like I will stay on Lupron also. Before the Lupron started a year ago my PSA was 67. believe II may be having problems again with Pancreatic cancer (Whipple in early 2019). Regardless, life is good. I have complete trust in my Oncologist.

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

reets70 | @reets70 | Sep 27 6:00am

My husband has been on Xtandi for three years and his PSA is still below 1. He has had Prostate Cancer for 30 years and since taking this drug, he has never been better! Side effects are minor, but the long lasting benefits are worth it.

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1 reply
melcanada | @melcanada | Sep 27 7:16am
In reply to @charlesinbaltimore "Not about that specific drug, but a class concern. Any more information out there: Neuroendocrin cancer..." + (show)
@charlesinbaltimore

Not about that specific drug, but a class concern. Any more information out there:
Neuroendocrin cancer
A warning. At the latest PCRI conference, they announced that they have found that being on one of the lutamides (Enzalutamide, apalutamide, Darolutamide) for four years can cause small cell neuroendocrine cancer. a cancer that is pretty much untreatable and leads to death within a year or less.

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Only on Xtandi 9 mos them Xofigio Radium 223 and now chemo pain bones/muscles

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amee | @amee | Sep 27 9:21pm
In reply to @reets70 "My husband has been on Xtandi for three years and his PSA is still below 1...." + (show)
@reets70

My husband has been on Xtandi for three years and his PSA is still below 1. He has had Prostate Cancer for 30 years and since taking this drug, he has never been better! Side effects are minor, but the long lasting benefits are worth it.

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With enzalutamide does your husband feel fatigue and weekness for few hours in a day?

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gooseknoll | @gooseknoll | Dec 2 4:04pm

I had brachytherapy in 2009. I had a biopsy of my prostate in December 2023. 12 of 12 sample clear. However. a small mass was detected by MRI in July 2024. I have been on Xtandi and Hormone treatment since August. I would like to hear others experience on the side effects of Xtandi? Is this a forever drug, even with the 6 month hormone injection. I find myself getting very tired easily, I have lost my appetite (and 30 LB). I am an active 77 yr old and this is very new to me. Is anyone else experiencing this same side effects?

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2 replies
jeffmarc | @jeffmarc | Dec 2 5:05pm
In reply to @gooseknoll "I had brachytherapy in 2009. I had a biopsy of my prostate in December 2023. 12..." + (show)
@gooseknoll

I had brachytherapy in 2009. I had a biopsy of my prostate in December 2023. 12 of 12 sample clear. However. a small mass was detected by MRI in July 2024. I have been on Xtandi and Hormone treatment since August. I would like to hear others experience on the side effects of Xtandi? Is this a forever drug, even with the 6 month hormone injection. I find myself getting very tired easily, I have lost my appetite (and 30 LB). I am an active 77 yr old and this is very new to me. Is anyone else experiencing this same side effects?

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Xtandi (Enzalutamide) Side effects can be too much for some people. Darolutamide (Nubeqa) does essentially the same thing as Xtandi But has many fewer side effects, including less fatigue. You might request your doctor change your prescription over to Nubeqa. I have Been on it for over a year and it has kept me undetectable for The last year. I know a number of people that are taking Nubeqa And are very satisfied with the side effects. Many are taking it without ADT (hormone drugs) including me for The last couple Of months.

I am 77 and it doesn’t slow me down.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 4 days ago
In reply to @gooseknoll "I had brachytherapy in 2009. I had a biopsy of my prostate in December 2023. 12..." + (show)
@gooseknoll

I had brachytherapy in 2009. I had a biopsy of my prostate in December 2023. 12 of 12 sample clear. However. a small mass was detected by MRI in July 2024. I have been on Xtandi and Hormone treatment since August. I would like to hear others experience on the side effects of Xtandi? Is this a forever drug, even with the 6 month hormone injection. I find myself getting very tired easily, I have lost my appetite (and 30 LB). I am an active 77 yr old and this is very new to me. Is anyone else experiencing this same side effects?

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Hi @gooseknoll, I moved your question about hearing other men's experience with Xtandi to this related discussion:
- Enzalutamide (Xtandi): Anyone have experience with this drug?
https://connect.mayoclinic.org/discussion/xtandi-2/
Click the link to read through previous comments and to reply to any other them to connect with others.

Since you are also taking hormone treatment, you may also wish to read these discussions:
- Does a person need to take Lupron and Xtandi at the same time?
https://connect.mayoclinic.org/discussion/dose-a-person-need-to-take-lupton-and-itandi-at-the-same-time/
- Lupron treatment and Fatigue...
https://connect.mayoclinic.org/discussion/lupron-treatment-and-fatigue/
Fatigue is a common side effect. Have you asked your oncologist about the length of time you'll be on this treatment?

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melcanada | @melcanada | 3 days ago
In reply to @markheuer "What would likely come after Xtandi loses effectiveness?" + (show)
@markheuer

What would likely come after Xtandi loses effectiveness?

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I did Radium 223 then chemo now looking at Zytega or Darolutamide

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1 reply
jeffmarc | @jeffmarc | 3 days ago
In reply to @melcanada "I did Radium 223 then chemo now looking at Zytega or Darolutamide" + (show)
@melcanada

I did Radium 223 then chemo now looking at Zytega or Darolutamide

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You probably want to go on Zytiga First, unless you have a heart condition. It’s better to go to Zytiga first then Darolutamide. Here is an article that discusses it. They talk about Enzalutamide but it is essentially the same as Darolutamide in how it works.
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30688-6/abstract?mc_cid=c2dca8aa74&mc__eid=99575fc699

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1 reply
melcanada | @melcanada | 3 days ago
In reply to @jeffmarc "You probably want to go on Zytiga First, unless you have a heart condition. It’s better..." + (show)
@jeffmarc

You probably want to go on Zytiga First, unless you have a heart condition. It’s better to go to Zytiga first then Darolutamide. Here is an article that discusses it. They talk about Enzalutamide but it is essentially the same as Darolutamide in how it works.
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30688-6/abstract?mc_cid=c2dca8aa74&mc__eid=99575fc699

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Thanks Even though 2019 seems truer today OS = 34.5 months

Then could I take Darolutamide if Zytek failed BTW my PSA flared Its 181 Was 10thn 40 a year ago

Not this from what you sent me

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