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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If Not Xtandi what are you going to do You need something

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@melcanada

asking again as its getting worse Cant sleep

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Have you tried changing the time of day when you take your tablets.
I started off with some sleep issues, having found my mind was constantly working overtime when i went to bed and trying to sleep.
Eventually settled on taking them half an hour b4 bed, around 10.30pm for me and my sleep is much better since doing that.

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@ruste

I have been on Lupron plus Xtandi for the past six months since rising PSA and PET scan diagnosed mets in bone and lymph nodes. I do experience hot flashes and fatigue; however, the drugs seem to be working so far. Testosterone has come down to 9 and PSA is down to 0.1. I have inquired about adding the LU-177 but can't do it because my blood counts are too low due to a blood cancer (MDS) with very low white and red cell counts. Fatigue is probably also related to anemia from the MDS. Also, I can only take half the dose of Xtandi due to its interaction with Plavix which I am currently taking for heart issue.

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My father is also taking xtandi with placid … what did you experience while on them both ? My dad had trouble with swelling of his feet why did you have to cut down to half the dose ? Should we bring this up with my dad’s doctors?

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Have been on Xtandi for a year. It has kept the spread of cancer down to a minimum but has the side effect of chills in the am

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I take Xtandi after oatmeal in AM Since Jan PSA dropped from 9.8 to 1.7 Added Xgeva injections
Was on Zolodex injections and still am 78 feel grea some tiredness
L2 was radiated 2 years ago 1,5 inc cancer out Now back in L! and T10 T11 but Xtandi will / pray it hold for 5 years Then new drugs such as Enoblituzumab

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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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@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 had a rising PSA a few years after Proton radiation treatment. PET scan shows some mets so started Lupron plus Xtandi (160 mg per day) treatments 18 months ago. PSA dropped to zero or near zero within a 3 months after starting treatments. It is working well so don't plan to change anything at this point; however, I do suffer the typical side effects of fatigue and hot flashes. Hot flashed are mostly controlled with an additional pill.

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@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 took Xtandi for 26 months. Excellent drug. Had fatigue, hot flashes and edema of extremities. Side effects are expected. Remember that your testosterone levels need to be at castration range (less than 50) to help control the cancer and that is what is likely causing your hot flushes. Fatigue is a common side effect of Xtandi. Expect a major drop in your PSA with this treatment. Wish you the best. Stay strong.

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@ruste

I had a rising PSA a few years after Proton radiation treatment. PET scan shows some mets so started Lupron plus Xtandi (160 mg per day) treatments 18 months ago. PSA dropped to zero or near zero within a 3 months after starting treatments. It is working well so don't plan to change anything at this point; however, I do suffer the typical side effects of fatigue and hot flashes. Hot flashed are mostly controlled with an additional pill.

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Thank You praying for the best and good luck to you as well.

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@ruste

I had a rising PSA a few years after Proton radiation treatment. PET scan shows some mets so started Lupron plus Xtandi (160 mg per day) treatments 18 months ago. PSA dropped to zero or near zero within a 3 months after starting treatments. It is working well so don't plan to change anything at this point; however, I do suffer the typical side effects of fatigue and hot flashes. Hot flashed are mostly controlled with an additional pill.

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

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