Xtandi

[roncyn]

Well got first two bottles today in the mail. I had PC at 50 with a GS of 9.

Had radical and 7 week of radiation in 97/98 . So now being androgen resistance this is my next step.

I am wondering how others have tolerated this med!

Ron

[RyderLake2]

Hello,

Everyone is different. I have been on Xtandi (enzalutamide) for over three years with no serious side effects. I have lost most of my body hair (but not on the face or head), fatigue, loss of libido, and a little brain fog. Nothing I can't tolerate (given the alternative). It certainly brought my PSA down and it has remained low for most of the time I have been on this drug. Hope that helps.

[roncyn in reply to RyderLake2]

Yes I have read tolerable and bad side effects depends on the person. My history is with meds some are horrible and others ok. I have been on zillions.. Thank you 4. The info..

Ron

[ctarleton]

I've been on Xtandi since November 2016 at age 68. PSA went down from 95.0 to 1.2 and remained low for quite a while. To add to what RyderLake2 said, fatigue and stamina has been my main thing. For me, it was like a continued trend from being on long term Lupron. After a few years I was happy to hire somebody else to do my heavier yard work. I got a little bit of "man boobs", but not much. My skin got less oily and drier. My nose hairs even disappeared. I never had any of the more serious side effects or adverse events as documented among the 800 men on Xtandi in the original Study as listed in the Full Prescribing Information for Xtandi.

accessdata.fda.gov/drugsatf...

[roncyn in reply to ctarleton]

Thanks

[Magnus1964]

I have been on xtandi for 4 1/2 years. I have not experienced anything really awful side effects accept a little brain fog.

Of course everyone is different but you always have the option to stop.

[monte1111]

Xtandi for 3 years 2 months. Lupron 3 years 7 months. 8 cycles chemo. Fatigue, brain fog and memory biggest issues. Don't know which side effects are Lupron and which are Xtandi. Nothing I can't live with. Most take Xtandi in evening or before bedtime. A wave of sleepiness comes over me about a hour after taking. Good luck.

[Shooter1]

Darn near killed me, but still on half dose....see my posts on subject

[Hidden]

Hey roncyn! That was one hec of a run from 98 .. where you on adt during this time? I Started this mad hatters project at 53 .. over five years ago ..but I’ve taken adt everyday since... good luck .

[roncyn in reply to Hidden]

Started Oct 97 been on adt 14 years .. first on Lupron in 97 and 98 for a year plus radiation started June 98 forc7 weeks.. Diagnosed at 50. Also have had urostomy and AAA repair both twice..plus lost kidney last October from AAA complications and urostomy. It’s been a long tough run.

Ron

[Hidden in reply to roncyn]

Hey roncyn , You probably could write the book on APC dear sir ? 14 years on adt ... wow! I have mucho sympathy for those dxed in their 40s or 50’s . I was 53 and felt young to the party ..We have a few in their early 40s with young families at home . That’s tough duty .. with just over five years in myself I’ll call you marathon man . Really amazing how you’ve endured . Pc just never ends ,does it ? It is a battle of attrition . Who can out live who . Great job of staying off of APC ‘s dinner plate . When a many a newbie reads your story it just might give them hope in living way past what they’re told . Take care and May the Xtandi serve you well . Shooter1 cut his dose in half in order to tolerate it . Do what you’ve got to do ...welcome to the gang ..

[roncyn in reply to Hidden]

Thanks for your kind words we all try to endure this PC!

[larry_dammit]

Good morning fellow warrior, I’ve been on it now for 50 months, doctor put me on it after chemo. I think I’ve ad most of the side effects listed but to the minor side. Only word of caution is to be careful with the pain meds, Xtandi does not go well with a lot of them. I had to switch to Ms Cotin and Dilaudid to keep my bone pain in check. Good luck 🙏🙏🙏

[EdBar]

I’ve been on Xtandi for about 5 1/2 years now, PSA is still undetectable. For me the main side effects are fatigue and loss of stamina. However I’ve experienced significant memory/cognitive issues as well. After about 3 years I started to develop headaches and an overall sickly feeling that seemed to creep up on me over time. I’ve been able to reduce the dosage to half of a full dose or 80mg and that seems to have helped quite a bit, however SE’s are still significant but tolerable. And as long as it’s maintaining cancer dormancy I’m good with it.

Ed

[Survivor1965]

Been on the X for 3.5 years with lupron. Same issues as all others mentioned. Always wonder if its the X or the Lupron causing most of the SE? No endurance and brain fog are the worst of it, wait, what was I writing about

[roncyn in reply to Survivor1965]

My clutch is already slipping!

[roncyn]

Do you take the Xandi morning or night?

[Survivor1965 in reply to roncyn]

Ive been taking in the morning

[j-o-h-n]

97/98? Geez those were the best years in my life when I could still get an erection....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/26/2020 5:36 PM DST

[zgjc09]

I was on Xtandi for 1-1/2 years and the PSA continued to rise - off now and in a chemo regimen. I hope it works for you

[roncyn in reply to zgjc09]

Guess we’ll find out in a month or so...

[kensawyerwayland]

After almost 3 yrs on Lupron, psa spiked to 25 a month ago. Went on XTandi. Yesterday’s psa = 3.6. Except for one odd day of dizziness (unrelated?), no SE.