Neuropathy: started on xtandi about... - Advanced Prostate...

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Neuropathy

Stomachcramps profile image
10 Replies

started on xtandi about 6 months ago after being on zytiga for a couple of years.Good results PSA went from 1.8 down to .061

My question is has anyone experienced neuropathy with xtandi?

Started a week ago in my hands at night,keeps me awake.Also taking xtandi in the morning and find it interesting people taking it at night.Does it effect you getting to sleep and staying asleep?

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Stomachcramps profile image
Stomachcramps
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10 Replies
RyderLake2 profile image
RyderLake2

Hello, I have been on Xtandi (enzalutamide) for three and two thirds years (early September, 2017). I definitely suffer from peripheral neuropathy as a possible side effect. On good days both feet have pins and needles. My right foot is always worse than the left. On bad days my right foot is almost numb. I am not sure I can totally blame Xtandi as I do have a serious compression of the vertebrae in my lower back. I soldier on with this problem as the Xtandi is keeping my PSA down and for that I am very grateful. I also take Xtandi at night as it does cause fatigue and some drowsiness in me. Hope that helps!

golddiggingrandy profile image
golddiggingrandy in reply to RyderLake2

I've been on Xtandi for over 7-8 mths now but my feet have been numb/pins and needles/ mushy feeling most of the time including when trying to sleep for over 2 yrs . I also get Lupron injections every 6 mths for over 6-7 yrs now. So, I really don't know one way or the other.

Shooter1 profile image
Shooter1

YES, full dose shut down my hands and feet. Couldn't wiggle a toe, balance shot , couldn't pick up a glass of water except with both hands and then water ran out of the corner of my mouth. I was way worse than most on xtandi, but after cutting dose to 80 mg/day, I recovered enough to have a life. Held aPca in check 3 1/2 years. Now PSA running 33-60% climb each month, but 3 1/2 years is considered a good run on this drug..

Chugach profile image
Chugach

Acupuncture worked for me

monte1111 profile image
monte1111

I have foot neuropathy. Started right after chemo and when I had started Xtandi. Who's to blame, I don't know. Maybe both. Someone else here had success with acupuncture. Don't know if that would be long term or short term relief.

Yank66 profile image
Yank66

Yes, DH has developed neuropathy in his feet since beginning Xtandi in August. He started taking it at night to help deal with the fatigue. He was sleeping through much of the day after taking it. It has helped him cope with the fatigue. .

larry_dammit profile image
larry_dammit

I take it late afternoon at supper time, it make my stomach a little rough. Been on it now 4 years and a little, the only time I had neuropathy was when they had me on opiods that were wrong for the pain. Xtandi doesn’t like a lot of pain killers. Keep up the fight warrior 🙏🙏

bean1008 profile image
bean1008

In addition to my prostate cancer I have disc compression issues and take gabapentin for the peripheral neuropathy. I’m wondering if anyone has tried this as it might help?

monte1111 profile image
monte1111 in reply to bean1008

Lots of us use Gabapentin. Really helps with hot flashes. (Just a nice added attraction. Other meds are designed to help with the hot flashes.) Does it help with neuropathy? Don't know. Take this 'cause the doctor said so. Does it keep it from getting worse? Don't know. I always have more questions than answers. Three and a half years now, I think.

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

Neurontin a/k/a Gabapentin............... helps but doesn't cure...

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Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/14/2021 5:18 PM DST

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