As good as Xtandi's Reputation is why are most of us in such tiredness

[sidnw]

Dan, Still waiting for the that blood from the vets..shd. be here this week hopefully. am taking the 1 pill at ab't 10 at night. After reading others' posts what do you think about one week on and one wk. off? I still walk back and forth a few times a day and try walking stairs twice a day......then I just about collapse. The guys who work out must have done it before too which I imagine helps them now. Let me know your opinion which I so value and anyone elses on the on and off..who are doing it now.

And......having been on Zytiga for 8 months I never felt this type of exhaustion.

Sidnw

[Tjc1]

Well i guess all the Hoopla is how it takes care of the beast we deal with. Side effects are just a scondary thing i think a lot of Uro's and Onc's kind of downplay. And some get it bad some get nothing at all. Im pretty much where you are. I cooked at a church function yesterday for 4 hours and i was wiped out. Laid down for an hour to recharge but still finished the night early. l'll see what my numbers are Wendsday.

Hope you continue good health Thomas

[pjoshea13 in reply to Tjc1]

I find the downplay thing frustrating. I witnessed this with my wife's onc too. I understand the motivation - not wishing to terrify someone who really has no choice anyway. But one can end up feeling blindsided.

But one doctor told me that a lot of his patients had a really tough time with Xtandi. Not so with Zytiga, but when resistance sets in, PCa harder to manage.

-Patrick

[Grumpyswife]

It seems too good to be true but my husband has been on Xtandi just over a month with no side effects. I keep asking him if he is sure he’s not constipated, etc., and he just looks at me like I’m crazy. I did catch him napping yesterday which he rarely does.

[rococo in reply to Grumpyswife]

If the naps help with the side effects so be it. I like my naps. Rocco

[Grumpyswife in reply to rococo]

I enjoy napping, too. Though sometimes too long and lovely a nap affects my night time sleep so I set a 30 minute alarm.

I love seeing my husband nap but it’s almost like he resists it. At 74 he is entitled to nap.

[Dan59]

Sid, How is your psa doing? Are the pills controlling your cancer. I would ask your Dr. what he thinks, seems it is pretty hard on you.I suspect your low red blood cells may be also contributing to this tiredness, and when you get past that you will feel more energy. What did the Dr say about possibly using a steroid to boost your energy level? I had to clear heavy snow Friday and I was tired for the whole next day, and now have a cold. Please keep me posted on how things are going.

Dan

Ps: Sleep when you are tired , and eat when you are hungry, and take some boost to make sure you are getting your nutrients

[Hidden]

Its just part of the show. With time and effort it can diminish. Takes time to,adjust. I’m just now after 3yrs getting a little more energy. It’s a catch 22. You must exercise to be healthy even in the short run. But where to find motivation while completely fatigued due purely to treatments. ???? What you’re feeling is a common side effect to most of us.. You can not lay down and give into lethargy. Rest as you must but try not to sleep more than you wake. I had chronic fatigue syndrome and it’s hard to break. My wife pushed me , still does, if left to my oun accord might slip back into laziness. If you have some one to give you a nudge and walk with it’s better.

[Hidden]

I am off ADT and not taking drugs for PC now at all. I can get 8 hours of sleep, wake up, and 5 or 6 hours later I need a nap. My fitness level is fine but my T is quite low. I think I am just feeling my age -- I just turned 68. I hope it's not a psychological thing -- I am retired for real this year and I don't have much to get excited about.

[Jvaughan0 in reply to Hidden]

I think the "rub" for you is found in "I don't have much to get excited about." Retirement plus dealing with PC has created a dark wall blocking any view you might have of seeing a future, satisfying and rewarding life. Low T level doesn't help either. Don't wait and see what cancer may or may not do to you; seek out what you may or may not do to life. Every day provides an opportunity for you to rediscover and redefine yourself.

[BigTom123 in reply to Hidden]

Used Nubeqa for almost a year before radiation and surgery to remove two cancerous nodes. Been off of it and still trying to lose belly fat. T is below 100 and PSA 0.07.

[rococo]

Its called intemittent. if you goggle it . Using psa levels to guide you through the process set arbitrarily. As to exercise. I think your right. we learn how to push ourselves

[chascri]

I have been on Xtandi since last August. I have been experiencing extreme fatigue since September. I have been on Fetanyl patches and Hydromorphone for metastasis pain since July. Can only walk or stand for about 5 minutes at a time. Experiencing a lot bloating and gas pain as well.

[EdBar]

If you are taking 1 Xtandi pill that is a fraction of the typical dose of 4 pills, I'm not sure if there is much benefit or "activity" as my doc puts it by talking 1 pill. Some docs will prescribe other drugs to help counter the fatigue from Xtandi.

Ed

[j-o-h-n]

I'm tired of being retired...

Good Luck and Good Health.

j-o-h-n Monday 03/05/2018 11:39 AM EST

[Beermaker]

Not to ride a hobby horse here, but I do find MMJ (CBD or CBD/THC blend) a blessing while dealing with Xtandi (three pills a day at night about 1.5 hours before I got to bed). The biggest issues now are a little fatigue, and so much water intake from all of the pills I have to take. Best of luck.

[Grumpyswife in reply to Beermaker]

I will keep that in mind for the future. My husband still really enjoys his beer and wine. At this stage he needs something to enjoy as he is no longer working which he lived for. Actually, he might prefer your regimen.