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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I took Xtandi for about 3 months and my PSA started rising. Just before that I was in remission for 3 years taking Zytiga and prednisone. The only side effects was the muscles in my back shoulders got sore and I needed help putting my coat on.

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On Xtandi for 2 months now Feel tired once in awhile Get tingles when I sleep on back but that may be my next and pillow choice. PSA from 10 to 4 in a month Next test April 4th Easy to swallow 4 pills a day $4K a month al covered by government HC Love it Still on Zolodex injections every 3 months I'm 78 enjoying every day
Med Oncologists say avg effectiveness in 18 months then other choices That is average so good to hear of 24 month and longer usages No trouble sleeping, no seizures, no pains Had L2 radiated 2021 March Looked at Radiating L1 but its close to L@ that was radiated and caution is suggested 1 inch cancer there on MRI as well as in T10 and T11 Its Stage 4 MCRPC now as C stopped responding to Zolodex, hence Xtandi or Enzalutamide added
Have to sit during long walks as spine is weak

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@robert570

I took Xtandi for about 3 months and my PSA started rising. Just before that I was in remission for 3 years taking Zytiga and prednisone. The only side effects was the muscles in my back shoulders got sore and I needed help putting my coat on.

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Do you get tingling in shoulders and back at nights sleeping

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@melcanada

Do you get tingling in shoulders and back at nights sleeping

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I started taking Xtandi the first week in Jan with an 6 month Eligard injection. My psa was 20.8 in Nov and now

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@dsingstock

I started taking Xtandi the first week in Jan with an 6 month Eligard injection. My psa was 20.8 in Nov and now

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Don't know what happened, but not all of my comments posted. Continue-

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@dsingstock

I started taking Xtandi the first week in Jan with an 6 month Eligard injection. My psa was 20.8 in Nov and now

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asking again as its getting worse Cant sleep

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It is my understanding and I may be off a bit, that Xtandi and Erleada are both very expensive drugs that are androgen receptors inhibitors. I was on Erleada and lupron in a Jansen Clinical trial at UCLA. Xtandi and Erleada both work in the same fashion, are about equally effective, have the same side effects and compliment drugs such as Lupron, the standard ADT, the hormone deprivation treatment. CRPC, such as my cancer, (castration resistant prostate cancer) is resistant to the full effect of lupron, ADT treatment, and Xtandi and Erleada were developed to kill more androgens that evade standard ADT. The side effect of lupron and Erleada were certainly noticeable for me but tolerable and considering the good that they do, I was pleased to get this treatment. If my PSA goes up I will probably be back on these drugs but I am hoping that my PSA is very stable for a very long time. I hope for a good result with few side effects for you and me and all of the guys on this site.

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@hbp

It is my understanding and I may be off a bit, that Xtandi and Erleada are both very expensive drugs that are androgen receptors inhibitors. I was on Erleada and lupron in a Jansen Clinical trial at UCLA. Xtandi and Erleada both work in the same fashion, are about equally effective, have the same side effects and compliment drugs such as Lupron, the standard ADT, the hormone deprivation treatment. CRPC, such as my cancer, (castration resistant prostate cancer) is resistant to the full effect of lupron, ADT treatment, and Xtandi and Erleada were developed to kill more androgens that evade standard ADT. The side effect of lupron and Erleada were certainly noticeable for me but tolerable and considering the good that they do, I was pleased to get this treatment. If my PSA goes up I will probably be back on these drugs but I am hoping that my PSA is very stable for a very long time. I hope for a good result with few side effects for you and me and all of the guys on this site.

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I was on Lupron for a short period of time when I had to stop due to the side effects. Next was Zytiga with prednisone which had to be discontinued due to breathing problems. For the past 15 months I have been on Relugolix which has, for me, been tolerable. Recently, with a rising PSA number my Oncologist says I will have to go back on Lupron with 1/2 Zytiga.
Is anyone else having the same experience?
Considering the success I have had with Relugolix, and all the alternatives I read about why does it have to come back to Lupron, and Zytiga?

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@dsingstock

I started taking Xtandi the first week in Jan with an 6 month Eligard injection. My psa was 20.8 in Nov and now

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Your last PSA was still 20? You should have at least 50% reduction in PSA after 4 weeks on the drug. I took it for 26 months with great results.

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@melcanada

Do you get tingling in shoulders and back at nights sleeping

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No, I did not, but I tried to sweep the snow off the walk and the next few days I got sore. I might have inflicted that on myself, but nevertheless Xtandi didn't work. Once I got off it , I got better but I still feel pulling in my shoulders at certain times but no pain associated with it.

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