Anyone else had these side effects - tingling and numbness in feet

I think you should have a check up at the Drs and a few blood test, B12 springs to mind as my daughter has a deficiency and has those symptoms.

Hi Martin Scultore  I don’t remember anyone on here talking about peripheral neuropathy other than caused by chemo (typically Docetaxel).  That’s not to say it can’t happen but sounds rare if at all.

Hello Martin (Scultore ) 

Just in case you haven't seen it there's an answer to your question in the "Ask A Nurse" group here:

 Side effects of hormone treatment for prostate cancer 

Best wishes - Brian.

Hello Martin. I took have severe neuropathic pain in both my feet. My GP said it was caused by type 2 diabetes but I have had the pain way before I was diagnosed with diabetes.

They have sinced discovered that I have Vitamin B12 deficiency and have had a series of injections and ongoing B12 tablets.

I am not sure if the HT/RT I had caused the deficiency.

They have told me that although my B12 levels have increased, the neuropathy is irreversible but medication is available to help with that.

I hope you find this helpful.

Best wishes 

Peter 

1000mg Abiraterone daily, 6 monthly injections, usual side effects, but also stabbing pains occasionally in my feet and hands (not as often). I asked my Oncologist and he said it may me... waiting for my bloods and the guy next to me asked if I suffered shock pains in my feet!

I get all sorts and just blame the chemicals.

Hello, I'm also on the duplet of Enzalutamide and Decapeptyl (aka Triptorelin). Started this year as only fully diagnosed in January with Advanced Prostate Cancer.

I do get a kind of tingling in my calves and feet but that all translates into 'restless leg syndrome', which is bloody frustrating. It's like I have an involuntary compulsion to do something with my legs. Spoke to the Uro-Oncology nurse today and who told me it's not common but it's also not an unknown side effect. It's sounds like there's some similarities between us but the differences may be bigger as I can't say I've noted any numbness or tingling in my fingers and I've not had any falls as yet (which can be a common side effect of the Enzalutamide the literature says).

I also get hot flushes (short lived) and suffer from some fatigue. I can nod off at the drop of a hat, but then again I am 70 years old.

Not sure this is of any use to you. I will say be wary of internet searches as every possible opinion can be found if you look around and then it's harder to get any clarity and you just end up confused.

All the best. David.

Thank you, David. When I started on this duplet of drugs, five years ago, I had the restless legs - very much so, it felt as if fire extinguishers were going off in my legs. That faded over time, to be replaced by the numbness in my feet (still increasing) and frequent burning or extreme pins and needles sensations in my feet. The fatigue has continued and grown over the five years, with a particular uptick earlier this year. The changes have been too rapid to put down to age (I am 78 and approaching the time when the hormone treatment is likely to stop working; Gleason score of 9).

Thanks again.

Hello Martin,

enzalutamide is known to reduce Vit D levels or effectiveness as do statins and this does cause neurological symptoms so it may be worth getting tested to see if your levels are low.

Rare things happen rarely but they do still occur to some people.

It does seem like the medical staff at all levels say that something is rare and are reluctant to accept you are that rare patient as happened to me during RT.

Good luck

Albert

Hi Albert, Thank you.

My Vitamin D levels were indeed reduced (indeed deficient) and I have been taking supplements since early in my treatment (nearly five years). Recent bloods show levels are ok.

I agree with you that rare things do occur and can be overlooked by busy practitioners. I am going to stress my symptoms at my next consultant appointment.

All the best,

Martin