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.

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hbp | @hbp | Aug 21, 2023
In reply to @butch1 "I'm new to this so here we go. PSA of 1717 10 biopsy done all (3+4)..." + (show)
@butch1

I'm new to this so here we go. PSA of 1717 10 biopsy done all (3+4) 1 (4+3) puts my Gleason at 7 it has metastasized to lymph nodes spot on lung possibly spot on liver to small to tell in pelvis shoulder ribs and a few other spots. On my second lupron shot wich has upset my stomach alittle. Start 2 80mg xtandi in the morning and was wondering if the xtandi has bothered anybody much. Also curious if anybody else on here is in this shape. I'm 62 and pretty healthy but afraid with these numbers things are going to get worse. Any input would be appreciated. Thank You

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I was on ADT and Erleada ( I have read some places that it is a chemo) and the side effects were manageable and the drugs worked great on my gleason 9 CR locally advanced PC Good luck to you

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gila | @gila | Aug 21, 2023
In reply to @butch1 "Thank You they suggested chemo and I told them no not till we see if hormone..." + (show)
@butch1

Thank You they suggested chemo and I told them no not till we see if hormone therapy will work.

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Hi, my husband is new to this club no one wants to join. He had RARP in June. We return to Mayo Phoenix end of September to determine further treatment. Trying to learn as much as possible. He is 66 years old, good physical condition, and has Gleason 9, Decipher group 5 with bladder neck, seminal vesicle invasion and one lymph node. We have read that his best chance at long term survival are ADT, radiation and chemo. Not sure what they will want to do until after his first post op PSA. Wish you the very best as you fight with these warriors.

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1 reply
butch1 | @butch1 | Aug 21, 2023
In reply to @gila "Hi, my husband is new to this club no one wants to join. He had RARP..." + (show)
@gila

Hi, my husband is new to this club no one wants to join. He had RARP in June. We return to Mayo Phoenix end of September to determine further treatment. Trying to learn as much as possible. He is 66 years old, good physical condition, and has Gleason 9, Decipher group 5 with bladder neck, seminal vesicle invasion and one lymph node. We have read that his best chance at long term survival are ADT, radiation and chemo. Not sure what they will want to do until after his first post op PSA. Wish you the very best as you fight with these warriors.

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Thank You so much and I also wish you and your husband the best as you fight this battle. Your right nobody wants to be on here but the encouragement and education that you get from others help us through this. ❤️

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melcanada | @melcanada | Aug 22, 2023
In reply to @butch1 "Thank you hopping this brings my numbers down. As for body hair I don't care if..." + (show)
@butch1

Thank you hopping this brings my numbers down. As for body hair I don't care if it all goes as long as it can give me more years to my life and hopefully a cure will be found in them extra years. Good luck with your treatments.

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No loss of hair anywhere No side affest On Xtandi 10 months now 78 feel great

Mets in L2 lumbar L1 was radiated 2020 Prostate 2017

On Xgeva as wel as Zolodex injection 3 months

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scottbon | @scottbon | Aug 24, 2023
In reply to @butch1 "I'm new to this so here we go. PSA of 1717 10 biopsy done all (3+4)..." + (show)
@butch1

I'm new to this so here we go. PSA of 1717 10 biopsy done all (3+4) 1 (4+3) puts my Gleason at 7 it has metastasized to lymph nodes spot on lung possibly spot on liver to small to tell in pelvis shoulder ribs and a few other spots. On my second lupron shot wich has upset my stomach alittle. Start 2 80mg xtandi in the morning and was wondering if the xtandi has bothered anybody much. Also curious if anybody else on here is in this shape. I'm 62 and pretty healthy but afraid with these numbers things are going to get worse. Any input would be appreciated. Thank You

Jump to this post

Well, I follow many contributors regarding PC and various treatments. Let me share my experience. I'm currently 77 years old diagnosed in 2019 with metatisized prostate cancer. During routine physical my PSA was 135 and by the time I saw my urologist it was 245. Biopsies and MRI confirmed cancer, Put on Lupron PSA rapidly dropped to 0,5. Contnued with ADT Lupron only for a year but it clobbered my energy, muscles, skin, hpt flashes so much I stopped in 2020. Changed health plan and new doctor put me back on Lupron, Same but less side effects. PET scans showed prostate and 2 lymph nodes affected. Continued Lupron into 2023 with Erleada added in April. Soon after developed serious rashes ove arms and back. Doc stopped meds. August 1 I underwent enlarged prostate HoLEP treatment. Big success to improve urinary function. Big suprise is prostate tissue analysis tested NEGATIVE for cancer. WHAT? No evidence of prostate cancer after procedure. Result is my doctor and I agreed to stop all further treatment and undergo surveiance PSA monthly testing. Appears I am cancer free after all this treatment but got HoLEP to proceed with radiation, but outcome is nothing there to radiate. My story for now and will see future development. Wishing all with PC stay positive and stay on top of it. Best to all. Scott

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hbp | @hbp | Aug 24, 2023
In reply to @butch1 "I'm new to this so here we go. PSA of 1717 10 biopsy done all (3+4)..." + (show)
@butch1

I'm new to this so here we go. PSA of 1717 10 biopsy done all (3+4) 1 (4+3) puts my Gleason at 7 it has metastasized to lymph nodes spot on lung possibly spot on liver to small to tell in pelvis shoulder ribs and a few other spots. On my second lupron shot wich has upset my stomach alittle. Start 2 80mg xtandi in the morning and was wondering if the xtandi has bothered anybody much. Also curious if anybody else on here is in this shape. I'm 62 and pretty healthy but afraid with these numbers things are going to get worse. Any input would be appreciated. Thank You

Jump to this post

Interesting development Scott. I too has lupron and Erleada for 13 months and stopped it 8 months ago. I am in remission and hope to remain there for a very long time. I had no terrible side effects from those meds. Good luck to you and I hope that you have a very long and very happy journey

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kmat | @kmat | Sep 25 4:31pm

Hello all. I am beginning Xtandi (120 mg/d) today in addition to Orgovyx (120mg/d). I've been taking the Orgovyx about 9am (give or take) and have thought to take the Xtandi an hour or so before bed (so on or about 8:30/9pm. I'm on these two drugs till Nov 6 when I have a CT scan. At that time I think we'll be talking radiation. I am 77, Gleason 4+3, intermediate cancer, PET scan indicates tumor (aggressive) is confined to prostate. Any sharing or insight is really welcome. Five months ago none of this was on the table and I still have no symptoms. I've always enjoyed pretty good health. Thanks again.

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1 reply
melcanada | @melcanada | Sep 26 5:02am
In reply to @kmat "Hello all. I am beginning Xtandi (120 mg/d) today in addition to Orgovyx (120mg/d). I've been..." + (show)
@kmat

Hello all. I am beginning Xtandi (120 mg/d) today in addition to Orgovyx (120mg/d). I've been taking the Orgovyx about 9am (give or take) and have thought to take the Xtandi an hour or so before bed (so on or about 8:30/9pm. I'm on these two drugs till Nov 6 when I have a CT scan. At that time I think we'll be talking radiation. I am 77, Gleason 4+3, intermediate cancer, PET scan indicates tumor (aggressive) is confined to prostate. Any sharing or insight is really welcome. Five months ago none of this was on the table and I still have no symptoms. I've always enjoyed pretty good health. Thanks again.

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On Xtandi Jan 23 when PSA was 10 Got it down to 1.1 After 12 mos PSA back up

Moved to Radium 223 or Xofigio for a year PSA 41 so now on Chemo

80 this week Feel great

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dirtdancer | @dirtdancer | Sep 26 7:52am

I started on Xtandi Four years ago and it helped with my PSA bringing it down from a two average below two.
After the second year, I started having urinary complications which my urologist said was from Xtandi. So he switched me to Erleada. Erleada did nothing and my PSA Rose about one point a day and now it’s over 100. It was hard to get him to switch me away from it as he was also the provider of it. I am now in Pluvicto treatment and will be for the next eight or 10 months. Constant pain.

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charles.In.Baltimore | @charlesinbaltimore | Sep 26 9:55am

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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