ENZALUTAMIDE (XTANDI) DEVASTATING - Advanced Prostate...

Advanced Prostate Cancer
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ENZALUTAMIDE (XTANDI) DEVASTATING

EZgoi
EZgoi

Well, first of all the sign in should be EZGoin', EZGoi, because my husband is the easiest going person in the whole world. Long story short, diagnosed 27 years ago (at the age of 52) PSA 53, Gleason 7. RP surgery, followed 2 years later by 36 treatments Radiation, Shortly after began Casadex, Lupron for many years. 4 years ago spread to spine, 4 mets ... 10 radiation treatments on spine, and on Zytiga/Prednisone since 3/15 .... never had ANY side effects from any treatment ... Lucky, I know. PSA started climbing over the last few months, so when at 11 MO put him on Xtandi. This has been devastating with every bone and muscle hurting so bad. Had to come home early from vacation he was so uncomfortable (that together with his need for a knee replacement in the next couple of month.) I think the Xtandi also made the knee worse. MO took him off the Xtandi (4 pills) for two weeks and said go to 3 pills after two weeks. It has been 11 days, very little improvement. Thinking of having him stay off for at least 3 weeks or at least until no side effects before restarting. For anyone who is taking Xtandi, would love your input regarding side effects, dosage, any and all info. After 11 days off he feels a little better today, but only a little and still very difficult and has absolutely no energy at all. HOW ABOUT ANY OF YOU GUYS?

34 Replies
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I have been on Xtandi (enzalutamide) for fourteen months. No serious side effects other than fatigue and loss of libido. I am 73 years old. PSA is undetectable at less than .008! Touch wood Xtandi is working for me. Good luck!

I’m 55. Have been on Xtandi since July. It’s been very hard on me: fatigue, weakness, soreness. I started on the full dose. MO cut the dose to every other day about a month ago. That has helped a little, but I could still sleep all day if I allowed myself. BUT it’s working, so there’s that!

Cut from 160 mg to 120, Started improving within three days. Cut to 90 mg. (two pills for three days and them 3 pills for one day). Been healing, improving ever since. PSA holding so far. Hands, feet, wrists all better. Knee pain gone. Higher dose was just to toxic for my body to handle. Split wood with 8# maul for 3 hours yesterday with sore muscles to show for it , but 2 months ago I couldn't even pick up a maul or piece of fire wood. Life can be good with lower dose.

If you search here there are many, many posts about Xtandi and side effects. I posted about hearing of a man over 100 taking one Xtandi per week. This was Dr. Snuffy Myer’s patient. According to him your husband will benefit from one per day or maybe less. He advocates taking it with Avodart and Metformin.

27 years has got to be one of the longest disease duration on here.

I take 4 per day and it is keeping my PSA down (after 9 months still working) I do get fatigue, so I get tired in the afternoon and get very tired around 8-9pm each night, other than that it has been good for me.

My husband has been on Xtandi since May. Elegard / Lupron since 2016. Hot flashes and fatigue. This is a man who could stay awake 20 hours a day. Not anymore. He needs a nap in the afternoon and is typically early to bed now. He does not describe aches and pains. He is taking all four pills daily. Best of luck to you and your husband

your saying husband dx at the age of 52 27 years ago now he's 79. to me that is great for long life at his age. my experience with xtandi was limited when it wasn't working then went to other and found zytiga worked great until i couldn't get it for the past 5 months. going thru cvs pharmacy and had to meet to qualifications. low income and something back from ss. also went thru a new treatment called PROVENGE its goal is to make one healthier lowers psa somewhat but it works on prostrate cancer cells. actually its a intercelluar drug. u go thrught the treatment and that's it.

Xtandi didnt work for me PSA kept rising. Full dose and side effects are extreme tiredness but everyone reacts slightly differently.

Worth discussing reduced dosage if PSA is low.

Been on Xtandi for almost 4 years now. Over time SE's seem to get progressively worse. Last fall it seemed toxic, I had a sickly feeling like I had been poisoned is the best way to describe it. MO cut dose in half which helped but SE's seemed to gradually increase over time - fatigue, cognitive issues and brain fog, joint and muscle aches are the most prevalent and over the past several months I've developed chronic dull headaches that are tied to fatigue and brain fog and a lousy mood.

I've resorted to daily use of low dose ibuprofen and Celebrix to cope with headache and body aches - treating the SE's so I can continue talking it.

On the bright side my PSA remains undetectable and scans are free of active disease, not bad for a G9er with extensive mets at DX. But I gotta say that treating advanced PCa as a chronic disease is no walk in the park.

Ed

podsart
podsart in reply to EdBar

How’s your BP?

EdBar
EdBar in reply to podsart

I’ve had hypertension for many years and take BP meds. Had a cardio work up, stress test etc. and all is good.

podsart
podsart in reply to EdBar

Glad your doing well Re cardio

My BP is very volatile, at times down at 120/80 at other times over 150 systolic, with stress playing a major role, ie getting PSA test results

Been on Xtandi almost 3 yrs. no major over SE except HBP made worse it seems. Seems to working on greatly reduced dose now. Made T very high.

JuanVV
JuanVV in reply to podsart

Hi Did your T get high with Xtandi? Despite your PSA going down? My husband's on it for 5 months and his T is rising -not too much - also his Psa is going up

Been on Xtandi going on 5 years ((Feb 2019) and PSA holding at 0.06. Wish it had just gone away, but I’m not complaining!!

After 9 months in, fatigue was kicking my arse and I dropped from 4 to 3 pills and began taking them at night. Both changes helped a bit. Tho not enough to keep me working. At 11 months I went on disability. That was Jan 2015.

I’ve learned to deal with the fatigue by knowing what I can/cannot do and for what periods of time. Rest periods are paramount for my sanity.

I do things I enjoy- garden/walk dogs/ putter like and old fart at 60. If I do anything strenuous, I do so with the knowledge that I’ll pay the piper, ending up horizontal for most of the next day or two.

Long gone are the days of 1/2, full and ultra marathons in the mountains, chasing elk on hunts, diving,kayaking, etc. And this really sucks. But I enjoy sunsets and the occasional sunrise, as well as tooling around the Forrest roads in my VW Syncro. My wife is very supportive and loving which helps a lot. But best of all (and don’t tell my wife she was not “best of all” ) I’m still alive and able to enjoy a couple beers each night!

For me, learning, adjusting and rest has been the key.

Best- Brian

monte1111
monte1111 in reply to BrianF505

Ahhh. The Life of Brian. I can imagine you in the balcony scene. And I am laughing really really hard. If 2 beers a night got you this far, my very extremely excessive beer drinking may kick the beast to the curb. We shall see.

BrianF505
BrianF505 in reply to monte1111

“a couple” beers. Couple in my world is 2-4. 😱. Tho I have to cut that down to a real “couple”. I’m getting fat!

Hah, maybe we should start our own subgroup - Beer Drinkers with PCa!? 😄

HiddenThis reply has been deleted
BrianF505
BrianF505 in reply to Hidden

Stick around Rust, plenty of humor in this group. 😄.

Doesn’t quite sound right when your fatigued, but cardio activities really help.

Didn’t understand the QSOs W4PSA, 73s reference. 😳

Have been taking Xtandi for 14 months. 8pm nightly. Become drowsy hour and a half later but that goes away. Having "minor" memory issues, etc. But these issues could easily be from other drugs I am taking. Was prescribed Prednisone 5mg 2 times daily when the Xtandi was prescribed. Don't know if that makes a difference, but if the The Big Easy went off the Prednisone after the Zytiga he may want to retry that. I am not a dr. (If I was I probably wouldn't be in this impossible situation.) If the issues are really from the Xtandi I think I would try the Prednisone. When I questioned dr. as not usual with Xtandi she said it was for fatigue etc. And have noticed others on this forum who were taking it along with the Xtandi. Of course no one mentions the long term effects. I may very well turn into a mushroom. Wishing you well, Monte.

Xtandi did the same to me. Right leg got so weak i was falling down and couldnt walk very far. Dropped dose to 3 and nothing. Went down to two and it is much better after a month or so. All while keeping psa to undetectable values.

My husband has had the same side effects, he has only been on Xtandi about 3 weeks, but seems to be getting better. His issue has been shortness of breath since he started XTandi Oncologist said it wasn't a side effect, but my husband has been waking up in the middle of the night, feeling like he can't get a full breath. Oxygen level good, no sound of fluid in his lungs....

Anyone else having this issue? Also, good news was that his PSA went from 50 to 9, so hopefully it goes down again when we check again in 4 weeks.

JuanVV
JuanVV in reply to bjevans1258

My husband has shortness of breath with Xtandi and same as yours has good exygen level or fluid in lungs, haven't been able to get a good answer to why..

I am 7 years into the struggles. Had an RP which had very ugly pathology reports. I went on Lupron for a year and took a vacation for awhile which showed me I still have very active cancer. Went on Trelstar which dropped me back to undectable. Uro and MO pushed me to add Xtandi about a year ago. I have big fatigue issues at 4 and 3 pills a day, but can get by on 2 plus 12 hours of sleep per day. Before I lowered the dosage, brain fog, memory issues, etc were pretty bad, but no physical issues. I won't say I like the current side effects of having to sleep 12 hrs/day, and neither does my wife, but we do what seems best, and right now that is the Xtandi.

So I take 2 pills about 2 hours before bedtime to help me get to sleep and feel more awake the next day. Good luck and fight the ugly bastard!

It ain't so ez-going...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/24/2018 5:12 PM EDT

At age 70 I've been on Xtandi for 2 years, and Lupron for 5 years. When I went on Xtandi the background level of fatigue went up a notch, and my skin got even drier. No big aches or pains, though. I've been transitioning the more physical household/yard chores to younger folks, commensurate with my slowly declining capabilities as I age on treatments.

I have been on it or 6 months .Started on 4caps a day and had to reduce it to 2 at present. Main side effect is just feeling so tired and the jitters. Have found reducing dose has made little difference. I researched it and f other drugs can make the level very high. I am on plavix and lipitor both of which increase the effect so have reduced them to see what happens.

its a bit of a wipe out fatigue and confusion. I heard somewhere it can lead to dementia like changes also- don't quote me though I cant recall source or accuracy. We've been given dexamethasone ( steroid) to help balance it out.

My husband has been on Xtandi for 5 moths aprox his Psa went down but now it's up to 63, it was ta 37 when he started Xtandi. He had pains at the start, leg and rib, but that has subsided, he has shortness of breath also. The problem is is that it doesn't make his Psa fall, so I guess it doesn't work for him. Before that he was on Firmagon for a year until his Psa started doubling up.

EZgoi
EZgoi in reply to JuanVV

Didn't work for my hubby. He will be starting chemo in 3 weeks .... we are anxious, of course, but as he says "it is what it is!!"

JuanVV
JuanVV in reply to EZgoi

Yes I can imagine your angst, lots of luck. Not sure yet what options my husband has because of his heart and parkinson the oncologist didn't want him to go for chemo..feeling desperate.

mjbach
mjbach in reply to JuanVV

I feel your pain and desperation. I know it well.

Didn't work for me and I got most of the nasty side effects listed here. Had to come off it after a few months. All other drugs have been very tolerable over my 3 year journey including chemo, but Xtandi was a complete bust.

My 87 year old Dad has been in treatment for 16 years. Currently he is taking Xtandi one on odd number days in am, 2 on even number days in the evening. This is the agreement with my Dad's Oncologist as I am my Dads Caregiver, Advocate and live with him now, since August. His PSA CA cells are present at .06. He has Lupron injections every 12 weeks. His prostate surgery was at Walter Reed 16 years ago, and some CA cells excaped at the time of surgery. He has had one bone rib metastasis, radiation treated, 3 years back. Currently he has fatigue, cognitive challenges and muscle loss, dry skin side effects. His exposure to Agent Orange in Nam at 34, 35 36 is the cause. At that time he was an A-4 attack pilot, a top gun in squadrons. He is a retired 4 star Naval Admiral and was on 3 boards up until 72, then retired. So, Xtandi is free through TriCare for life and he can afford private specialists. I felt it important to share all of this information because we never know how you or me can support one another. And he is in Cardiac Rehab after stent heart surgery 6 months ago. and yes he has his 2 Martinis nightly! Why not! Right now, he is at a nice maitenance level. Praying he continues to have good quality of life. I practice many holistic styles with him: more water, no sugar, more fresh foods and vegetables, walking, hot tub, CBD supplements, and many more. And always, I must practice the balance for myself. So, with the loss of my Mother and brother in 08, CA is not something I fear, it is the balance and attitude that keep me centered as we fight the battle for the good cells to fight the bad cells. Onward with LOVE!

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