Enzalutamide just keeps giving and giving: Hot heels

[BrentW]

As of the past couple of months I have had to sleep on my back. It is too uncomfortable to sleep on my side.

The enzalutamide I am taking has made the muscles in my right arm rigid, so it is far too uncomfortable to sleep on that side despite taking the opioid Longtec (40 mg at night).

Nor can I sleep on my left side. I had neuropathy in my left pelvis due to radiation treatment I had for a wayward PCa tumour in my sacrum. Despite the Longtec, that side is far too uncomfortable to sleep on.

So, I have been sleeping on my back.

This last couple of weeks I have been waking with burning sensations in my heels.

I am not diabetic or prediabetic -- the first explanation many might reach for.

Instead I learn that it may be peripheral neuropathy associated with the enzalutamide. Bummer. I have no idea how I cope with that or how to get a good night's sleep.

Is anybody else finding the same effects? If so, what are you doing to cope?

[noahware]

When I had nerve pain recently, I found a combination of gabapentin and THC helped both with nerve pain and with sleep. Occasionally added low-dose lorazapam (Atavan) as well. Both the THC and lorazapam seemed to help with my attitude TOWARDS the pain, and ease some of the negative emotions that constantly arose with the increased pain intensity. (Pain seems to cause me anger or sadness or both... go figure.)

I was told opioids may or may not help with nerve pain and neuropathy, but they certainly helped with my back (bone) pain and probably also with getting relaxed/drowsy.

[I am now also on a short course of high-dose dexamethasone, that really seems to help with pain overall, but on one night of somewhat intense pain it totally negated all the relaxing and sleep-inducing effects of the other three drugs... I was up all night with only partial pain relief. Steroids do NOT help you sleep!)

[Fightinghard in reply to noahware]

noah. I have exact same issues!! The steroid really helps calm down the nerve pain but keeps me awake all night. So now i take low dose steroid 10mg in am, then 50 mg tramadol about 7 pm. In between take tylenol plus advil every 6 hrs.

Still have back/rib pain but can function ok

[Kaliber]

hi Brent …. I don’t have much of a remedy for you, but I’m a “ full bore “ adt zombie, 50 months now. My muscles are very stiff and rigid , rib cage down on my back, legs , waist , feet and all. I need a wheeled chair or etrike for mobility. I can’t stand up straight and have to shuffle my feet to walk and much more.

There is a, strictly anecdotal, line of thought that says the more “ adt zombie “ you are on Xtandi ( E ) , the more sensitive your are to the medicine and the more benefit you receive from it. My first offer of care was a table full of doctors and care workers strongly encouraging me to enter hospice. I asked for “ at least “ a try at some kind of treatment. I got Lupron Xtandi Zometa and ( now ) 50 months of extra life, so far. It’s pretty much hellish but I’m fine with adt zombie, I have a very strong survival instinct. I find workarounds for the problems zombie causes me , pretty successfully. My QOL pretty good.

Dunno if that helps or not but it might be worth considering , looking forward.

❤️❤️❤️

Also : I feel like I’m wearing a triple layer of heavy wool socks on both lower legs - feet. Transient hand finger tip nerve issues but Vicodin and Xanax pretty much settles that problem, especially for sleep. FYI.

[Fightinghard in reply to Kaliber]

kaliber. You are like a old Timex watch. Take a licking and keep on ticking.

Congrats for making it 50 months on the big E. Thats double what most of us get.

[Kaliber in reply to Fightinghard]

thanks buddy …. I’ve got the extra time and danged grateful , but I’ve got a bunch of deep scratches on my plastic watch face and a lot of the gold plating has worn off my elastic band. That extra time comes with a lot of physiological wear and tear but it’s worth it to me. Going in for my 49th Zometa pain train Thursday morning too yayahahahaya.

I appreciate it ❤️❤️❤️

[JD-guy]

I do not have any remedies, just my experience. I started enzalutamide(Xtandi) June of 2022, I have neuropathy in my right foot, now I developed a pain and burning in my right heel mostly when I walk and the feeling of some neuropathy also. I had an x-ray of my heel and I have a spur. Have not decided what I am going to do about that yet. It has not kept me awake at night yet at this point. Like I said no remedies, just my experience. Keith

[gsun]

For my nerve pain I am taking Gabapentin and Misoprostol. My pain is less than yours but it stopped mine.

[Boywonder56]

What about switching to erleada......

[MateoBeach]

If this is due to the enzalutamide then you can tell your doctor that you cannot tolerate it due to severe unacceptable SEs. Discontinue it and see if symptoms resolve and replace it with another drug such as abiraterone or darolutamide.

[RCOG2000]

i have found indica variety of mj very helpful for sleep with the peripheral neuropathic pain in feet. Also starting on low dose rather than standard dose and gradually increasing may lessen some side effects.

Xtandi at 40 mg reduced psa to Three months later moving up to 80 dropped it to 0.14

At that point added eligard 30 day dose and combo put it down to .02 at end of first thirty days

“start low and go slow” may be a good way to manage the side effects and determine optimal dosing to control the disease

It has been good for me so far

[BrentW in reply to RCOG2000]

I take it you live somewhere where cannabis has been legalised, RCO. Not o for me. However, having had lesions in my lungs, I try to be careful as to what I breathe in nowadays. Thanks for replying, though.

[GAdrummer]

If you take many naps or spend a lot of time in bed, watch out for bed sores on the heels. Try using a pillow to transfer the leg & foot weight to broader areas of the lower leg. Treat the sore heels with Pepto-bismal.

[Fightinghard]

brent. Try wearing some thick loose fitting cotton socks to bed. Rub heels with petroleum jelly before putting socks on at night. Keeps heels soft and cozy

Be careful when you get up not to slip on the socks!!!

[BrentW in reply to Fightinghard]

This sounds eminently sensible, FightingHard. I shall give it a try. It would be lovely if it proved to be no more than bedsores.

[BrentW]

My other half and I had a long talk over dinner. We are both feeling pretty hopeless. Never in the last 20 years of my treatment have we felt quite so despondent -- except perhaps for 2010, when a newbie oncologist told me to get my affairs in order. I concluded by saying that my oncological team feels to be running out of options. I hope I am proven wrong when I meet with the local oncologist on Wednesday.

[Fightinghard in reply to BrentW]

assume you are taking full 160mg dose of the xtandi? Many have seen improvement in leg strength at lower dose while still controlling the cancer. Lowering the dose vs stopping the treatment that is still working would be preferred. Might try reducing to 3 pills for about 2 weeks and see if any improvement. If not, try 2 pills for a couple weeks.