Burning Sensation in Toe...ADT related?

[DJBUNK]

I am nearing the end of my first year of ADT treatments (Eligard) with one more year to go. About two months ago, I noticed a burning sensation in one of my big toes, like someone was holding a cigarette to my toe. The pain lasts a few minutes before subsiding. I've read that this could be a sign of neuropathy, which could be a result of my ADT treatments. I also wake up many mornings with tingling in some of my others toes on the same foot.

Has anyone else experienced burning in their feet or toes following ADT?

I'm currently 58 in good health, RP in 2019 followed by RT in 2020. G9 with ECE, SVI, LN+ but PSA has been low since surgery and undetectable since beginning ADT.

[Hidden]

Hey DJBUNK! It’s probably neuropathy. I have it also. Par for the course .. it’s from adt and rt .. I’m 60. Six years ago I did imrt and I’ve done first Lupron and now still on a pill form of adt tak-700.. with no breaks for six years . No T for me.. .. walking is good . Keep moving .. massage , hot tub , infrared sauna, all might help.

[Shooter1 in reply to Hidden]

Living with it in hands and feet... Mine will flame uncontrolled if I quit my Gabapentin. Chemo. ADT. Xtandi. all added up to kill some of my nerves and greatly inflame others.. Good luck, yours sounds very minor..

[MJCA]

You may have gout. My father gets it and it normally always appears in his big toe. It’s due to eating too much of certain foods. You may wish to have a check for it.

[Bananabum in reply to MJCA]

I have gout too. It's very different.As others have suggested drug-induced peripheral neuropathy seems the diagnosis.

[MJCA in reply to Bananabum]

I have neuropathy but not like that. They’ll put you on Gabepentin. It helps me a little bit.

[j-o-h-n]

Peripheral neuropathy. From Doc (Neurologist): Neurontin/Gabapentin 600mg 1 in the AM and 1 in the PM...

I am not a doctor but I do look handsome in a white coat....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/21/2021 4:38 PM DST

[Bananabum]

Hi, yes I suffer from a similar condition, which I attribute to two years of Luprin etc.None of my oncs seem to take it seriously.

It started in my left big toe about a year ago and has now spread across both feet.

It's bad enough to wake me up.

After a few minutes upright it subsides; but not at the original site. The toe always hurts and is numb at the same time.

It's a difficult pain to explain.

I'm sure it is a known feature.

I find my ( highly remunerated) specialists dodge my side effect/ pain questions.

Like some nasty radiation issues.

Perhaps they are scared of legal implications...?

[DJBUNK]

Thanks to all with your comments and suggestions. I do have a gabapentin prescription from my MO. He prescribed it to me at my last visit for hot flashes and before the apparent neuropathy started. I only used it once as it made me very tired in the morning. I decided I would only use it again if the ADT side effects became more bothersome than the gabapentin side effects. So far that hasnt happened so I'm lucky I guess.

I did forget to ask one question, which is are these ADT side effects (neuropathy) permament once I am off the ADT? And since ADT effects are cumulative over time, can I expect them to worsen (referring to the neuropathy here...I was told the hot flashes tend to subside over time).

[jmarsh in reply to DJBUNK]

I saw that you started following me so I read your posts. Our journey seems almost identical. Some blood in stool, apparently from hemorrhoid/possibly induced by radiation. G9 RP at age 56 and 33 salvage radiation treatments. Toe burning from possible neuropathy. I stopped my atorvastatin, and it has improved significantly. Are you on a statin? I will probably start back on it when I complete my 2 year Abi/Pred in a couple weeks.

Question - did your T return to normal range yet? Libido return? ED or not?

I have a lot of questions as I am about to complete treatment. Hoping BP will also return to normal when I finish. How about you?

[Mascouche]

I've gone through a series of problems with my feet that began about seven months after radiation therapy was over.

First it was intermittent electric shocks to my feet. Got that under control thanks to Nalakrats who had suggested a combination of NAC, Benfothiamine and R-Lipoic acid. This fixed the issue after taking for 6 weeks. I then tried stopping those supplements and the problem came back after 2 or 3 days. Restarted them, the problem went away again.

I've since dropped NAC from my daily regimen but I keep taking Benfothiamine and R-Lipoic acid every day.

After two and a half year on Lupron plus Abiraterone and Prednisone 10mg, my feet began to turn red and bloated in the evening with something that felt like the skin wanting to burst open while simultaneously being burned and cut. Luckily this subsidedin intensity after several minute but they would remain painful until I fell asleep but my feet were fine in the morning.

Not sure what to blame for that second type of problem. Could be the radiation, could be the ADT but I've got the feeling that maybe it was because of Prednisone as my metabolism was out of whack and I became insulin resistant with my weight going from 165 pre-treatment to 212 at the end of the 2.5 years of treatment, despite not eating more and exercising as much as before. It's now been a year since my treatments ended and my weight has dropped down to 175. That second type of feet issue went away only a few short months ago. So to fix this issue, I did not have to take anything special, I just had to let enough months pass after I had stopped ADT, Abi and Prednisone.

Since February of this year, I have a new issue where my left toe just extends itself fully towards the ceiling. Thankfully those episodes are far apart (I think it happened maybe 4-5 times since February, with the latest being a week ago) but they are painful, kind of like you'd feel when you get a cramp in the calves or thighs while sleeping. When an episode begins, it usually lasts about 15 minutes but it is freaky not to have control over your left big toe. I try to bring it back down to the floor with my right foot but it feels like I am fighting myself.

I will most likely be starting back on ADT in a week or two because a met was found in my right shoulder blade. I say ADT because I've chosen to postpone radiating my shoulder blade met at this time for fear of pulmonary fibrosis.

But when someone suggests that I might have to be on ADT for life, it makes no sense to me. If I got this much damage to my feet and metabolism from just 2.5 years on ADT (and radiation), how would my body not get even worse from doing more years of serious damage to it. If the pain to my feet comes back once I am on ADT, will I have to think about needing to amputate them? Is this worth it just to gain a few months or a few years of a tortured life?

That is why I know that unless I somehow can thrive with my new combo of Orgovix and Xtandi, I will probably end up doing intermittent ADT to heal myself somewhat in between sessions rather than ongoing ADT.