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Exhaustion with Xtandi, anyone else?

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Posted 5/30/2023 8:52 PM (GMT 0)
I've been on Xtandi since late Feb-2022.
Anytime I try to do any hard physical work, I become exhausted very fast.
Last summer and before it wasn't so.
It's never been like this for me, ever!
Is this just me, or are there others in this community that have experienced this?
Posted 5/31/2023 12:25 AM (GMT 0)
Fatigue is probably the main reason why people discontinue xtandi. I lasted about one year and between the fatigue and the headaches it became too much. But I give credit to xtandi as my psa for the last three years has been .oo goose eggs. I continue to take lupron which I was on with xtandi. Lupron gave me headaches and fatigue and xtandi made those problems 400 percent worse. I would take it again if I had to.
Michael
Posted 5/31/2023 12:33 AM (GMT 0)
Just another possibility ~ wanting all the best for you ~

Have you had a recent ferritin test to assess iron levels?

Easy to assess, next time you visit the lab ...

What would your oncologist say about taking a month or two break from XTANDI, to evaluate and reassess?

We have had members here who tried ZYTIGA (Abiraterone Acetate) instead ... and seemed to tolerate it better.

Each case is unique, it seems.

Hope you can consult soon with your oncologist & discuss possibilities.

With my best,
CYCLONE ~ # Iowa State University
Posted 5/31/2023 4:01 AM (GMT 0)
Its only been two months for me, not as long as you but I have noticed patterns.

1) If I dont do a brisk walk in the AM my day goes from one yawn to the next. I get 5000 steps before anything. Anything.

2) 10k steps/day. You mentioned you were a programmer/technologist. I am as well. So easy to sit for hours concentrating on one logic puzzle after the next. Every hour I do 600 steps. Takes 5 minutes. Just move. 8x600 is 4800 plus the 5000 from the morning walk gets you very close to 10k

3) gym 2 or 3 nights/week. Find a routine there. Something for your arms and core. Not more than 30 minutes.

4) good nights sleep.

5) not many carbs

6) if i need a nap i will take it but set the alarm for 15 minutes.

If I don’t do the above I feel like jello.

If your weakness seems sudden to you I honestly would see a heart dr.
Posted 5/31/2023 12:17 PM (GMT 0)
I was on Xtandi for 18 months, am now off it for 18 months.

While it is in your blood it chemically binds to any receptor that wants testosterone. Do a search for where those are and what they do.

I quit Xtandi because it crippled me - I went from 50 miles a week trail running to being a 'wall walker'. (I am now back to about 20 miles a week because I lucked out.)

Your fatigue comes from muscle, lung and brain cells that took up the enzalutamide and are being functionally suppressed. Docs told me that it takes about 18 months off it to notice recovery, and I am now noticing that.

These are very powerful chemotherapy drugs, they have many profound side - effects, some of those are permanent. Check the Internet for the side effects for the drugs you are on.
Posted 5/31/2023 12:49 PM (GMT 0)
IMHO there's probably not a whole lot of difference between Lupron alone and the various combination therapies for side-effects.

They are all bad and good at the same time. The bottom line is staying alive.
Posted 5/31/2023 1:02 PM (GMT 0)
Same here. I only started XTANDI in April, but am experiencing fatigue right out of the box. When I do grounds work, I literally find myself needing to sit down after an hour or so on my feet — this is something entirely new for me. I have decided to join a local work out place, engage a trainer — again something new as I have always had plenty of sources of exercise. I am hoping that as XTANDI is so new for me that my body will “adjust,” but sounds as though cumulative effect often goes the other way. Like all of us at this point in the disease, I am trying to keep the beast out of bone, and will do XTANDI as long as I can. Good luck to all us X brothers… Bill
Posted 6/1/2023 12:06 PM (GMT 0)
The combination of therapeutics is more than a simple addition, more like multiplication.
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