Barry: Hi, Anyone experienced... - Advanced Prostate...

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Barry

littlemount profile image
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Hi, Anyone experienced ENZALUTAMIDE, BE GRATEFUL FOR YOUR EXPERIENCE ON IT?

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littlemount
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21 Replies
Grudle profile image
Grudle

please do tell

MoonRocket profile image
MoonRocket

I'm currently taking Enzalutimide as a mono therapy. I feel about the same as I did while I was on mono Eligard. I am not experiencing any brain fog that some men complain about. I did get radiation to the chest prior to taking to limit any breast enlargement. So far no breast tenderness or enlargement.

Chadsdad profile image
Chadsdad in reply to MoonRocket

Being on Enzalutimide only, do you have a normal T level or one at all ? I’m on Eligard and Erleada and have started thinking about dropping the Eligard at the end of the year which will conclude 5 years. I have had a consistent 0 PSA and <10 T level. Very hard decision to make after such a good response and sure don’t wanna wake anything up.

MoonRocket profile image
MoonRocket in reply to Chadsdad

I'll let you know in April at my next MO appt.My last Eligard shot was October 2023. My last MO appt. My T was 10 ng/dl. I do think the Eligard is wearing off because I do feel slightly better than say 3 weeks ago but that could just be my wanting to feel better.

TBH, I'm not sure if this is the wisest of treatment protocol but when my PSA started to rise after being on mono Eligard for 12:months, my MO wanted me to add the Enzalutimide based on the EMBARK trial. So I did at 80 mg initially. I was all set to increase to 160 mg at my last MO appt when he dropped the decision to stop the Eligard. My PSA did drop from .5 to .27 so I am encouraged I can get to < .2 and stop all treatment at my next appt or soon after.

My thinking now is my T will begin to return while on mono enzalutimide so when I stop I won't have to wait the extra 3-6 months for it to return.

As far as I know, I am non metastatic after my last PSMA scan 2 years ago. Long winded but wanted to highlight my treatment history since resuming ADT after my initial treatment failed.

lcfcpolo profile image
lcfcpolo

I've been on Enzalutamide (Xtandi) 4 tablets daily since July 2020, so over 3 and a half years. Also on ADT (Prostap) quarterly injections. Also some supplements and repurposed drugs which are detailed in my profile.

I've tolerated the Enzalutamide OK so far🙏. You do get fatigued and I've lost muscle and put on weight. Exercise definitely helps. Good luck to you.

Apisdorsata profile image
Apisdorsata

I took enzalutamide 4 tabs, 160 mg daily, for 18 months during one of my times on Lupron. By the end I was pretty much disabled. On the couch or in bed most of the time. Unlike most ADT meds it gets into the brain. I won't try it again but as Icfcpolo shows not everyone is as hammered as I was. You might tolerate it well enough. Also, when my MO saw how it was effecting me he said I could cut the dose to 120 or 80 mg daily. But at the time I was still hoping for a cure and wanted to go hard at it. It hasn't worked out that way though.

jazj profile image
jazj in reply to Apisdorsata

Correct me if I'm wrong but I don't believe there is any drug therapy that can "cure" prostate cancer, just delay its progression. I believe surgery alone, surgery then radiation on biochemical recurrence, or radiation alone are the only potential cures?

Apisdorsata profile image
Apisdorsata in reply to jazj

At the time I had only one know metastasis, in bone, and it was radiated. My hope was that was the ony met. Not usually true, but one can hope. Sure, hope is not a plan but I hoped anyway.

Kaliber profile image
Kaliber

probably a few people expect me to chime in on this one. I’m probably the group poster boy for everything awful ( debilitating SEs ) that can happen on Enza. Even to the point of being in a wheelchair. But I’m OK with that. I could stop Enza and switch anytime I wanted and Kaiser would love that ( $139.00 a month instead of $12,000 a month ) .

Enza quite literally , miraculously, saved me from the gates of inpatient hospice when first diagnosed….and is “ still “ keeping my PSA at <0.1 for over 64 months so far.

Plus the longer I can ride this horse, the longer I save Abiraterone for next if I ( also miraculously ) live long enough .

“ be grateful for my experience on it “ ? Well , dunno about that…. I’m grateful that it gave a LOT more life extension than any of my medical team ever dreamed it could / would , but grateful for my devastating experience on it …probably not so much. Just say’in.

❤️❤️❤️

j-o-h-n profile image
j-o-h-n in reply to Kaliber

Just say'in. Thank you God for ENZALUTAMIDE and Thank you God for Mr. KAL.

Good Luck, Good Health and Good Humor.

j-o-h-n

Kaliber profile image
Kaliber in reply to j-o-h-n

Yayahahaha yayahahaha no kidding … enza has prolonged and IS prolonging a lot of the brothers here. Most guys don’t have my experience, that’s thank goodness .

Went out on my etrike to a local shopping center today after lunch. First time out of the house in a while. It was glorious springtime too. Trike running good , hitting a little over 20 mph . About 15 minutes drive one way. Even bought a $5 scratcher and made $10. Yayahahaha yayahahaha. Kewl brother j.

Just say’in ( lol )

❤️❤️❤️

j-o-h-n profile image
j-o-h-n in reply to Kaliber

Always good to get out of jail and see what's going on. Fresh air and if I know you (which I do) you probably talked stranger's ears off. $10 for $5 ain't bad but a lot of ending zeroes would have been more betterer......See ya in the movies....

Good Luck, Good Health and Good Humor.

j-o-h-n

j-o-h-n profile image
j-o-h-n

Great photo........

Really want attention? Glue one of those "used" dildo dicks (available at your local sex shop) to the front of your bike helmet (with a sign to "shake hands with little dickie")....

Hey, Just like your scratch off........ you'll probably get 5 to 10..... if you take a plea...

p.s. Used ones are cheaper....

Good Luck, Good Health and Good Humor.

j-o-h-n

MoonRocket profile image
MoonRocket in reply to j-o-h-n

SMH...

j-o-h-n profile image
j-o-h-n in reply to MoonRocket

HMS Bullshit......

Good Luck, Good Health and Good Humor.

j-o-h-n

MoonRocket profile image
MoonRocket in reply to j-o-h-n

That ship sank....

j-o-h-n profile image
j-o-h-n in reply to MoonRocket

Bullshit..........

Good Luck, Good Health and Good Humor.

j-o-h-n

MoonRocket profile image
MoonRocket in reply to j-o-h-n

I agree.

j-o-h-n profile image
j-o-h-n in reply to MoonRocket

Bullshit the Bullshit....

Good Luck, Good Health and Good Humor.

j-o-h-n

Kaliber profile image
Kaliber

yayayayayaya you are so bad bad bad …. Just like we expect from our loveable J-O-H-N.

And BTW … ewwwwwwww

❤️❤️❤️

davidjroberts profile image
davidjroberts

My doctor prescribed me enzalutamide brand name medicine to treat my condition. Enzalutamide is a type of hormone therapy drug, and I have experienced relief from my pain since taking it. I hope my experience can offer some assistance to others.

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