Xtandi (enzalutimide) SEs

[MoonRocket]

I recently increased my Xtandi daily dosage from 80 mg to 160 mg. In conjunction with this increase, I am stopping Eligard.

I read many posts on the SEs of xtandi and it's difficult to asertain if these SEs isolated or more pervasive than reported. I'm mostly interested in those who get brain fog and how long did it take before the brain fog was recognizable?

[Kaliber]

Ah …… imho, and from what I’ve read here over the last 60+ months.

Most Xtandi users have few to mild SEs. And Xtandi ( imho ) seems to be coming to the forefront as a very effective treatment. It seems to do very well , be long lasting for a large number of users.

On the other hand a rather small amount / percentage of Xtandi users experience ( I’m the poster boy for these ) very pronounced, sometimes extreme SEs. Hefty brain fog took me over at 5.5 years to develop where my short term memory is somewhat impaired and I’m showing a bit of ischemic, small vessel, white matter brain damage….. which I suspect could be argued attributable to many men approaching 80 years old ( 77 ). My team of doctors thinks / agrees the amount I have is pretty much inconsequential, considering.

Just my thoughts and direct personal experience as an extended Xtandi user. Personally, I’d fight to stay on Xtandi ( and I have, bitterly, recently in Dec-Jan ) even tho it has me in a wheelchair . I’ve been told that I’m particularly sensitive to xtandi and that is the reason that it has impacted me so strongly, but also why it rescued me from the jaws of inpatient hospice for over 60 months now. I love it, I hope it works as well for you, if you decide to use it. I also take Lupron with my Xtandi.

Love brother

❤️❤️

[MoonRocket in reply to Kaliber]

Thanks for the reply.

My goal is to take treatment breaks when I get my PSA to < .2.

I still work so I am concerned about the brain fog.

I didn't get it at 80 mg but now that I've upped it to 160mg the SEs may start showing.

[Kaliber in reply to MoonRocket]

Hopefully you’ll get enough info here to help with your decisions. Lots of great info here.

❤️❤️❤️

[Kevinski65 in reply to Kaliber]

me too

[docbulldog in reply to Kaliber]

I was on full dose Xtandi for over 2 years as well as Elligard and had good success. PSA rose so moved on to Zytiga but it didn’t work. After attempts to control rising PSA with Pluvecto, Chemo, Nubeqa….. I was hoping to go back an try Xtandi combined with something else, to get some positive results.

My high PSA, 327 is my biggest concern, but with little to no pain.

We just have to keep on keeping ahead of this monster!

[Kaliber in reply to docbulldog]

I’ve heard of brothers rechallenging Xtandi again, there were some conditions associated as I recall, probably someone like T_A could say more about that. I hope you can get ahead of it and stay there for a lot longer.

❤️❤️❤️

[Tall_Allen]

A recent randomized trial proved that Xtandi was less effective without Eligard.

prostatecancer.news/2023/05...

[MoonRocket in reply to Tall_Allen]

If you are referencing the EMBARK trial, my MO and I are using that trial for transitioning to mono enzalutimide. I've been on Eligard for 18 months and started the Xtandi 2 months ago at 80 mg daily. My MO indicated he wanted me to come off the Eligard so I'm stopping the Eligard and continuing with 160 mg enzalutimide.

[Tall_Allen in reply to MoonRocket]

It can provide somewhat of a QOL break, but, as you see, there is a cost.

[maley2711 in reply to Tall_Allen]

Conclusion...today, if PSMA PET had been done, for most men distant metastasis would have been found. So, what treatment box will apply to such men if that is true? And if regional pelvic node mets only are found, what treatment? Uncharted territory with the more sensitive PSMA PET?

[Cactus297 in reply to maley2711]

I ask myself the same question about my son’s PC. Too bad men can’t have the PSMA pet scan sooner rather than later but it’s new and still expensive and not every place has it.

[jbskiatook in reply to Tall_Allen]

Xtandi by itself is ok if I had a orchiectomy? Psa nondectable and T < 14 so all I should do is just watch for a rise psa to detectable and T to rise also. Right?

[KocoPr]

Brain fog… if no testosterone in the brain no estrogen being made thus brain health suffers

[MoonRocket in reply to KocoPr]

Would you think coming off the Eligard would help with the brain fog issues? That would be a good outcome. The other outcome I'm looking for is a return of my T while on mono enzalutimide and not have to wait for it to return when taking breaks.

[KocoPr in reply to MoonRocket]

It took 9 months on Orgo and Daro for my E2 to drop to less than 10 so I suspect it could take awhile to recover unless you can get low dose estrodiol pathes.

[Cactus297 in reply to KocoPr]

Interesting!

[afab]

I’ve been on Xtandi and Elegard which have kept me durable remission for 10 years. The brain fog has been there from the get-go. I experience it at least daily.

[Apisdorsata]

I took enzalutamide for 18 months at 160 mg daily. For awhile I did OK but gradually I became more and more debilitated, couldn't think clearly, slept most of the day. I don't remember the exact time course only that by the end and for several month after I was in bed or on the coach asleep most of the day. I won't take it again. It crosses the blood brain barrier, unlike most other drugs. Yet some people seem to do OK on it. I'm not one of them.

[MoonRocket in reply to Apisdorsata]

Thanks for the reply.