If you develop CIPN during chemotherapy, and it becomes permanent, can you subsequently find it has progressed to another site some years after the original diagnosis?
I finished 6 cycles of Docetaxel in October 2019. Once the stabbing pains and feeling of being electrocuted had worn off, I was left with a permanent feeling of numbness across approximately one third of each foot. It might be said that ‘I had become uncomfortably numb’ (Sorry Pink Floyd). I was told there is no clear treatment for this neuropathy and that any therapies like spinal cord stimulation and sending non-pain messages to the brain are not freely available, or even reliably successful. I tried Vitamin B12 and R-Fraction Alpha Lipoic Acid without any success, but at least I had the belief that if my CIPN couldn’t be cured, at least, it wouldn’t get any worse.
This last year, I found that I have become very unsteady on my legs. They feel very weak and sometimes it seems they are going to collapse under me. I have taken to using a stick to walk any distance not so much to help me walk, but to help stop me wandering all over the pavement. I read a couple of articles that said neuropathy can move to a new site, up to several years after the original nerve damage. If only somebody had told me about icing hands and feet before I had my chemotherapy, I might not be posting this. However, it is what it is.
I would be interested in hearing from any of you who have had similar experiences with CIPN, and whether you have found anything that helps contain the symptoms. In the meantime, the full quote from ‘Comfortably Numb’ seems quite apt
When I was a child, I caught a fleeting glimpse
Out of the corner of my eye
I turned to look, but it was gone
I cannot out my finger on it now
The child is grown, the dream is gone
I have become comfortably numb
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Dastardly
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May I ask if there is the possibility that you're unsteadiness on your feet is unrelated to neuropathy - but possibly because of metastases newly pressing on your spinal cord? Apparently you had mets to various vertebrae.
I asked this because on my diagnosis I had become unsteady on my feet - and it was because of "severe narrowing of the spinal canal" by the metastases at several vertebrae.
I was given fast-acting Firmagon/Degarelix ADT and within a couple of weeks I had become much more steady and within a couple of months there was no more concern at all. That's just my anecdote in case it is helpful.
A success for figuring this out and continuing your fight!
Thanks JohnInTheMiddle. You raise a good point about spinal metastases, but I don't think this is the reason. I have been unsteady since chemo. The numb feet mean I can't always feel the ground I am walking on, so I tend to wander when I walk. I don't think a combination of Tinnitus and Benign Paroxysmal Positional Vertigo helps much either. All in all, I'm in a bit of a state but, hey ho, onwards and upwards.Hope all is well with you.
I had chemo 10 years ago (non PCa related). To this day I have peripheral neuropathy in the soles of my feet. Nobody in the health service mentioned frozen socks and mitts; and to this day they still do not as it’s not SOC!
It never goes away but you do get used to it. Lying in bed is when it’s difficult to ignore. It’s has become a question of mind over matter. Good news is it does not affect my balance.
I know that frozen socks and mitts are not SOC for chemotherapy, but I am both surprised and annoyed that nobody makes any effort to mention such items, and then leave the choice to you whether or not you use them. Considering the damage and effect on quality of life, I would have thought it pretty obvious to try all measures to avoid the development of CIPN. Why does nobody in the NHS care?
I was going to say "OK, I've got my little rant out of the way", but I really do think this is a serious failing, especially when there is such a simple solution. OK, icing hands and feet doesn't always work, but its certainly worth a try.
Now, I'm glad to see you are dealing with your own CIPN very well. This whole cancer trip is an exercise of mind over matter. It's the only choice there is.
“Why does nobody in the NHS care?” They might care but they are instructed to work within SOC, presumably to avoid legal challenges if something goes wrong.
The exercise I get at the moment is walking up to 2 miles each day. It is mostly on pavements and roads as I can't trust my balance on ground that is too uneven. By the time I get back home, my legs are ready to give in, so 2 miles is my max. I walk pretty fast, so it is a fitness exercise rather than a leisurely stroll.
Getting to see a doctor is easier said than done these days, and I'm not really sure what he/she would be able to do for me anyway. If it is the spread of nerve damage, that's about it. I like the idea of exercise bands though. I used to use them a few years ago, and they are worth another try
hubby has neuropathy in feet and fingers. Chemo in 2018, 2022 and again this year. He walks about 20 minutes per day for bone health. Has learned to live with it but hates the numbness. I have had it for 20 years in my feet- burning, numb feeling that leaves me weaving at times too. Mine is most likely a result of a medicine I take everyday for long term stomach issues. We both take B12 and I get massages in my feet and body every 3 weeks
Sounds to me you are both much worse off than I am. It certainly seems that neuropathy is one of these things that health experts rarely talk about, and the attitude is that nothing can be done if you have it. And yet, any effort put in to ameliorate nerve damage in the first place can only be a good thing and could improve people's lives no end.
Dastardly - I have had a very similar experience with the neuropathy, lack of balance, etc. my doctors at MD Anderson here in Houston have told me that acupuncture frequently helps to minimize these side effects. Until I get scheduled for the acupuncture I’m on 300mg of gabapentin each night. It has provided some relief.
I tried acupuncture a couple of years ago. There was a very slight improvement, but, as soon as I stopped, the numbness went back to the previous level. I'm not saying that will happen to you, but that was my experience of it. Your suggestion of Gabapentin is quite interesting. Are you having any side effects from it? Its quite surprising how little research is done in how different drugs react with one another. Right now, my cancer drugs are reacting badly with my atrial fibrillation drugs and causing a lot of breathlessness., so am not looking for another big complication.
my husband has neuropathy after chemo, in fact they stopped his due to a mile long list of side effects including affecting his heart. He can’t get warm and then has hot flashes from ADT. I think this is a nerve issue. He also can’t feel part of his left hand and has extremely bad stabbing pain in it. His feet and right hand have numbness and pain.
We tried acupuncture, didn’t work. We are going to try physiotherapy. I have a good friend who’s husband is a physician that works in rehabilitation. He says this is the best and most effective. My husband is also taking Lyrica. We also do a tens unit and bio freeze. Im hoping we see see some improvement his last chemo was in May of 2024. He plan to start physiotherapy in a couple weeks. We are busy moving. Curious to see if anyone else tried PT. I hope you find relief.
Your husband is certainly going through the ringer with the effects of chemo and I certainly hope the physiotherapy brings some relief. I think we would all like to know how he gets on with that. I must admit, I have never thought of using a tens machine on my foot, and the use of bio freeze looks interesting as well. Two things I will follow up on.
I think my MHSPC is turning me into some form of hypochondriac. But it's not really the cancer I am fighting, its the side effects of all the drugs and treatments you get. For example, going on to Abiraterone was possibly the cause of my Atrial Fibrillation which makes me very breathless. When I take the drugs for AF as well as for Abi, my breathlessness gets worse. What doesn't kill you doesn't always make you stronger. Still, all is not lost if you're well enough to complain.
Yeah, it’s a catch 22. I will keep you posted on how it goes. Look up nerve flossing and physical therapy. I’m trying to get my husband well enough to do that. We tried once and it was excruciating.
I too had neuropathy in both of my feet after 10 rounds of Doxetal. I had about 6 rounds of acupuncture. The acupuncturist used electric stimulation, a Chinese star tool, and pneumatic massage tool. I had a lot of improvement over the months after chemo. I bought a pneumatic massage gun and use it almost nightly on my feet. It helps me a lot
I too had 6 rounds of acupuncture, but this was just with needles. There was some improvement, but it didn't last. I'm intrigued by the pneumatic massage gun and looked them up online. Needless to say, I was swamped, so I was wondering what massage gun you are actually using? I finished my chemo in October 2019, so I don't expect anything will do much good. On the other hand, since I can't tolerate Abiraterone any more, I may well be back on chemo when my PSA starts to rise, so I am also interested in making sure my current levels of neuropathy don't get any worse, or I'll end up in a wheelchair.
I had needles with small electrical current from my acupuncturist. The massage gun is what the acupuncturist was using, so I bought the same thing. It’s on Amazon.
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