HealingWell
Search Close Search
☰

XTANDI

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/4/2020 3:59 AM (GMT 0)
I am new to this forum. I was diagnosed in 2012...Gleason of 9 - started on hormone therapy and it worked for 3 1/2 years. Then Zytiga and Apalutamide. That worked for another 3 1/2 years. I just finished 6 injections of xofigo. I had intermittent pain and my PSA is now up to 5. The doctors at MD Anderson now want me to start on XTANDI. Anyone out there with this experience? I'm in my mid 70's and I'm active. Thanks all!
Posted 4/7/2020 8:37 PM (GMT 0)
Moved this question to the right forum.
Posted 4/8/2020 2:21 AM (GMT 0)
AJ - I can’t help with this but others will. It may help if you tell the rest of your story, have you had primary treatments such as surgery and/or radiation? Any issues with the previous treatments?
Posted 4/8/2020 11:33 AM (GMT 0)
On Xtandi + Eligard now.

More fatigue, more stress incontinence, some additional cognitive impairment but overall nothing to write home to mom about. Got a grant for the co-pay which is substantial.
Posted 4/8/2020 12:58 PM (GMT 0)
AJ, welcome to the forum, not much I can add to this discussion, as I don’t hve rxperience, but stay tuned, lots of guys here do have experience with Xtandi and will surely chime in soon
Posted 4/8/2020 2:17 PM (GMT 0)
I'm on Xtandi. I have no experience with Zytiga or Apalutamide, but I doubt you will experience much difference.

Good luck with your treatment!
Posted 4/8/2020 7:24 PM (GMT 0)
Adding to my post of April 3rd. After being diagnosed with PC, I had a robotic prostatectomy. The surgery went well. The disease had progressed beyond the prostate. So, I then started with the hormone therapy drug. After PSA went up I was put on abiraterone and apalutamide. Worked great for 3 1/2 years. PSA then started upward and had pelvic bone pain. Then got the 6 injections of XOFIGO. Pain mostly gone but PSA up so I've been given xtandi - 160 mg per day. I had no problems with the abiraterone and apalutamide....but, wondering about the side effects, etc. of xtandi. Thanks all!!!!!!!!!! AJ
Posted 4/9/2020 12:25 AM (GMT 0)
AJ - Thanks for the info, there are a number of folks here who have a tough hand dealt to them like you. Cyclone-ISU comes to mind if you want to search for his posts. I think he is or has been on Xtandi. The Covid-19 problem has slowed the forum down a little lately so be patient for replies from those in a similar situation.
Posted 4/9/2020 10:52 AM (GMT 0)
Oh yeah - I gotta add that I had some constipation from Xtandi at first, but I started taking a Mg supplement following wife's advice. She had the same problem while pregnant with our son and used Mg to address that. Works for me as well.

I never used to take pills at all, now I take a ton of them every day. Most are centered around PCa.
Posted 4/9/2020 4:37 PM (GMT 0)
I’ve been on Xtandi since 1/20/20. Zytiga before that but the Zytiga didn’t agree with my kidneys so switched to Xtandi. I’ve had several SEs but nothing too bad. Hot flashes, BP needed adjustment on Rx’s, had back pain and some visual disturbances, insomnia, and maybe a couple of other minor issues. Discussed them all with the MO and he told me most people adjust to the SEs after 3 or 4 months on it if they have any at all. I’m doing better now and am thankful that we have these Rx’s as a treatment option. Also just qualified for the Rx $0 copay program through the manufacture.
Posted 4/11/2020 2:49 PM (GMT 0)
I was on Zytiga for about 6 months. Although it did drop my PSA a couple of points, it never got below 6.1. PSA went up a point from 7.6 to 8.7. in the last month. The doc changed me over to Xtandi and my latest PSA was 5.6. Side effects have been negligible, pretty much what I experienced on Zytiga except for some mild headaches.
Posted 5/7/2020 12:01 PM (GMT 0)

Hello AJ123,

Welcome to the forum. Glad you posted.

You've gotten some great responses to your post.

In addition, there's a newly updated thread here about XTANDI that the fellows here have put together, with many first-hand experiences. I think you will find it helpful.

Just go up to the top of your screen. Find the search box, possibly next to a magnifying icon. Type this thread title into the search box, as follows:

XTANDI: OUR COLLECTIVE EXPERIENCES

The thread will immediately pop up.

Click on it, and you'll have a wide range of responses about XTANDI, with helpful insight from our members here.

Hope you are doing well with XTANDI. Hope you are seeing some meaningful results.

Let us know how you're faring! We're glad you posted, and hope to hear from you again!

With my best,
CYCLONE --- # Iowa State University
✚ New Topic ✚ Reply