Vent about Permanent Neuropathy
Comments
-
kmmd and BosumBlues -- Thanks for the info! It's so hard to tell what is neuropathy and what is chemo-induced neuropathy or something else! I figured that my legs were getting weaker just because I wasn't able to move around much (tied to an IV drip)... but now I'm thinking it is probably related to chemo-induced neuropathy. I'm not getting any pain, so I thought I was escaping the neuropathy, but when my foot went numb, that changed the picture!
Hopefully we can come back a bit from all this stuff and not have permanent effects. Nerves heal super-slowly, so it's hard to tell if they are going to heal or not. I'm just going to hope for the best because there's not much choice, really. There doesn't seem to be much the doctors can do about it, anyway...
rose50 -- Hmmm... I haven't heard of CBD oil, either. -- did a quick search... Cannabidiol... might have some neuroprotective quality according to Wikipedia. Do you just put it on topically? ...Interesting! --Oh, some people say there is a pill... so internally taken, I'm guessing...?
0 -
rose, do keep us posted about the drops, dang but on Good Friday, I was at a service and a friend asked me why I was limping! like the stupid feet hurt
0 -
Hi Ladies,
There's no question that my neuropathy came from taxol - numbness but thank God - no pain. The most annoying is around the upper part of my face - ugh. My internist told me to take 50 mgs of vitamin B6. It's supposed to help heal nerve damage. The neurologist said this side effect will take time. It was worse - it felt like dry milk around my mouth. I'm happy that's gone. I guess little by little I'll see improvements.
Good luck!
Marie
0 -
Yes, Marie, you are correct, nerve damage heals slowly. Many years ago I had a radical hysterectomy for cervical cancer which involves unavoidable nerve damage. After the surgery my thighs were just completely numb, no pain, just a weird numbness. Gradually over a period of months it subsided, but to this day 11 years later I have a small numb spot on one thigh, but I rarely notice.
I'm trying to keep that experience in mind while enduring this neuropathy from the chemo. I'm about 2 months out and I've already seen some improvement. The numbness in my fingertips is gone, so that's good news. My toes are another story, and I continue to have bladder issues, but I had some of that before. I'm grateful to have seen some improvement and that I haven't experienced the pain that so many of you seem to suffer. I'm optimistic that I will continue to improve, but realistic that some of this may be here to stay.
Keep your chins up and going forward.
0 -
While neuropathy can definitely be permanent, it's great to hear that you've all experienced some improvement in the past! At least we have some hope, right?
B-complex vitamins were definitely recommended to me to help with neruopathy. I'm not sure how much I should take, though. I've take SOME all through my chemo, but I worry about over-doing it... however, I know I can probably bear having more than the recommended amount due to all the nasty chemo... I guess I should ask my MO!
I'm curious about those cannabis drops. Seems to be a lot of studies going on with them, but not quite enough results so far. However--as long as they don't do anything really bad, it can't hurt to take them and see, I'm sure. I might ask about those, too... although I think my MO is a bit on the conservative side when it comes to alternative medicine!
0 -
April25 - My neurologist said a B-6 supplement of 100 mg (over & above the 3mg in my normal multi vitimin) could be helpful for neuropathy but more could damage nerves instead of protect/heal. Of course I had been taking twice that all through chemo. I also take an additional 1000 mcg of B-12 (1mg) once a day, and 500 mg of Acetyl-L-Carnitine twice a day When chemo & subsequent Herceptin was completed my PCP suggested I change to a B complex supplement, which I may switch to once my current supplies are gone.
And as a hopeful comment - my fingers are much better. Still some numbness, but significantly improved. Feet still not great. Both my toes & the balls of my feet are numb with numbness running up my calves. Oh well, the two years aren't up until October so I still have some hope.
0 -
Okay, I'm not sure this is the right place for my question, but has anyone tried acupuncture for neuropathy? I found one practitioner who made a serious dent in it - absolutely amazing - but two weeks later I think it's coming back a little. Also, anyone trying high doses of calcium?
Also, apologies if this was discussed earlier in the thread, I haven't gone through it all...
0 -
I am curious if anyone has noticed whether nail polish on your toe nails has any effect on your neuropathy. I have moderate neuopathy from chemo, finished a year and a half ago. Some days worse than others, as you probably know. This will be my second summer post chemo, and I traditionally like to wear polish on my toes in summer. It is getting to be sandal weather, and I am wondering if anyone has noticed if polish has any effects, neg or pos. I cannot imagine my feet without the perky pop of color! As I type that I am reminding myself that I couldnt imagine myself without nipples either....
0 -
Thats where I am at too!
0 -
Meadow - I have one big toe nail that may actually grow back sort of normal. The other one is stunted and according to the docs measurements, it's getting smaller (pulling in). As of today, I'm to go back to keeping a fungus polish on it to see if that helps. But I don't believe polish has anything to do with neuropathy.
I'm surprised to note you're wearing sandals. I was told to never go barefoot or wear sandals anymore. Because my feet are numb, I'm supposed to have shoe protection.
0 -
I was not advised otherwise, but I can see the logic behind that. Thanks for the info
0 -
Yeah - the logic is great but I never wore shoes except at school or work for 60 years. I hate not walking around barefoot. I hated not wearing sandals last summer. Sorry - just a mini-rant.
0 -
BosumBlues, thank you for the info re acupuncture. I'm having mixed results. The first time I tried it with a certain practitioner, I noticed a huge difference even as I walked out the door, my fingertips were tingling, it was wonderful! But then a couple of weeks later I was outdoors for much of a cold, rainy day w/o gloves and it was a definite setback. But it sounds like I shouldn't give up yet, especially since my insurance is actually paying, at least up to my usual office co-pay. Plus I finished chemo ~10 months ago so I'm worried about it not resolving.
As for calcium (+ magnesium), my MO recommended it. I saw some articles about it possibly helping w/neuropathy. I'm taking only a little bit extra, 1000 mg Calcium and 500 mg Magnesium per day. I don't always remember to take all of it though, and on the days that I forget I think the neuropathy gets slightly worse...
0 -
Oh Bosum - so sorry for this result. For me, it's much worse not knowing than having an answer. Where will the do they punch? (I mean where on your body). Will that tell them about neuropathy anywhere in your body? I've been taking LOADS of calcium all along for bone issues, but haven't seen much effect on neuropathy. Maybe it's because I'm not taking magnesium? I'll ask the doc.
0 -
Several pages back I posted a review of what studies had shown so far with what did and didn't help with neuropathy.
0 -
B-Blues, I can't tell you how to spend your money, but WHY subject yourself to biopsies? You KNOW it is from the chemo, and you can just Google and read WHAT that does to our nerves. I believe the damage is to the axon, or nerve fiber itself. Doctor's are rarely ones to turn away diagnostic tests...they are far too lucrative, but as you said, what you will be paying for is the "label" of the damage and neither the cure nor the relief. Either way, they'll try and shove some gabapentin your way, and either way you will improve a certain percentage over time or you won't. My MO asked if I would like to go to a neurologist. I said, "Why, they can't fix it!"
-----------------------------------
I am in the camp of what kmmd did post a ways back in this thread: There really is nothing proven to heal us from this neuropathy, and a very few things that actually might help some with symptom relief. I am not being negative; and because some do get relief from things like accupuncture or cannabis oil, it is only natural to want to TRY things to see if they will have any positive effect on us at all. The body is incredible and it wants to be healthy, so each day it really is working toward a healed state---but after something as devastating as chemo, a lot of us don't make it all the way back.
Personally, in almost 2 years, I have gone from ~50-60% numb in the feet to 15-25%, and I have been at the same plateau for at least six months. The 15% is on a good day. I go backward at times..
Also, I am in a mental loop/internal dialogue that goes like this: I hate this CIPN. It's not fair. I am trying my best to move beyond cancer. Besides the scars on my body, I don't need any more freakin' reminders of it. Am I going to have this for life now? Horrible! Wait. My hands aren't affected. I have my balance, can walk, ride a bike, even went rock climbing one time (granted, it felt like climbing on something other than feet...) and from just reading here I know a lot of ladies are worse off, so maybe I should shut the heck up and quit being a little cry-baby about it. But, I hate this CIPN. It's not fair...
Rinse, repeat.
p.s. To anyone taking mega-calcium: DON'T. That can just create a new host of problems.
0 -
I got sent to a neurologist. He basically said it would either come back or not, if it's chemo-induced. He also said he kind of liked infrared light treatments, but also told me my MO had talked with him about it and the MO was very skeptical. (If anyone wants to know the kind of infrared light treatment he seemed to favor, just ask. A set is available on Amazon, but it runs $500 to $1000 ! ). I thought about it, since what the heck? But am too busy with the chemo and surgery now to play around with such things, I think.
And I just got one of those Nerve Conductivity Tests yesterday... no results back yet. The tech said my nerve was working, at least. (It jerked when they put the electrical current through it.)
I figure I might get a brace if I need it (I've got the drop-foot)... but so far I'm not walking around much (too tired from the chemo), so I really don't need it yet.
I'm glad the Neurologist at least admitted there wasn't much to be done. Hopefully I'll get the results of the test and that will be that.
I had my last chemo, and my drop-foot doesn't seem to be any worse, so I'm hopeful that at the very least, things won't get worse... and maybe the nerve will improve over time so I don't have to worry about a brace. *sigh*
I still have the cancer to worry about... Need to do surgery next... so first things first... I have radiation to deal with later!
0 -
april25, If what you are writing of is anodyne therapy, I had it early on. It has been somewhat successful with diabetic neuropathy (which is different than CIPN!) Did it do anything for me? Hard to say. I think it might have helped with some early discomfort. I never really had bad pain, mainly just numbness. At the same time, I was supplementing with B6 and getting the feet massaged, so it is hard to separate what was doing what. I had it done as part of PT, so all it cost me was a $20 co-pay. As for the pricey home units...I don't know.
I want to remain hopeful and do not want to discourage anyone here from also hoping to recover but I can't help feeling that we are all desperate enough to guinea pig ourselves on products/techniques that don't have much to offer. On the other hand, even if we were to use some hokey snake oil remedy and it gave a positive placebo effect, well it would be something. It is just disturbing that it comes to this.
On the subject of disturbing, I do think that CIPN is under-reported. Also, no one seems to have an honest discussion about it prior to doing the chemo either. This and lymphadema are like BC treatments dirty little secrets. Sorry, I'm almost veering into rant territory, but I'm real unhappy about the collateral damage.
0 -
elimar that isn't being discouraging, that is just being realistic sometimes. You know like some of the papers coming out saying, you know someone needs to talk to women ahead of time about how many women never make it back to the top of their careers and what chemo (especially) and a breast cancer diagnosis (in general) does to finances. There are those things that send you into despair, and those things some of us would rather know up front, we're all different. I'm an up front, dont' blow smoke person.
0 -
Yup - Rant, Rant, Rant from me ... "it will never happen to you", "It is very rare", etc. And yet it seems like a fairly substantial number of us have both neuropathy & lymphadema. I too wanted to know up front, but I don't think most docs have a clue - and it's certainly under-reported. Didn't someone on one of these boards once say: 'crapity, crapity, crapity, crap.
0 -
crappity crappity, that made me smile
0 -
kmmd - I like your spelling better than mine.
0 -
I like the crapity! any spelling is good, it may be my new fav way of swearing
0 -
BosumBlues, What was your Oncotype score? With a Grade of 3, it could not be that low, could it? With an aggressive grade like that, I would think that you would get more benefit from chemo than just 1-3%. I am curious is you know the percentage of your ER+?
It does seem like cold and damp make our CIPN worse. Damp weather seems to aggravate arthritis too. Personally, I think if anyone also has arthritis (that's a lot of us) or fibromyalgia (a few more) that those pains seem to kick up the CIPN a notch too.
0 -
BB, I just came back from my PT for my stupid back, the therapist said that as soon as she saw the weather, she knew most folks would be complaining of more pain today~~maybe that is why I am back on the coach with the lovely heating pad now
0 -
BB, In some ways, the grade is a more significant factor than the stage. My Onco-score was an 18, with high ER & PR percentages. My doc also said chemo would only lower risk another 2-3% and I just felt I'd be better off doing only Tamox, so I passed on the chemo. I think if I had been Grade 3, I would have definitely done the chemo (read: would have been too scared not to.)
Unfortunately, I managed to get another cancer and loads of chemo with that one...and here I am.
0 -
just a shout out to Meadow, it has been noted & i concur - that pedicures feel wonderful! and a little polish can make those dastardly feet at least look normal & beautiful! my feet feel best in sandals or barefoot - tho i understand the need to be careful about cuts & such. just got back from FL & hated getting back into shoes & socks for work
0 -
Just saw my neurologist yesterday. He said both legs were definitely weaker than they should be, looking at the nerve conductivity test I just took. ...I knew my legs were feeling weaker as I had to pause going up steps, just in case I couldn't actually make it up! But at first I thought it could just be muscle atrophy since I haven't been able to exercise at all...
Apparently just exercising will not do much. I'll just see him again in 2 months and if things are still bad he might have some suggestions.
The good news is that my drop foot, while still there and numb, isn't getting worse... and might be slightly better. I'm walking a bit more easily than a month ago, anyway. Could be because the ankle swelling (from twisting it by tripping over my toe--which is probably due to neuropathy), might have contributed to the problem--and that is getting better.
I still have a chance of things improving. I guess I'll just have to wait and see if it happens or not!
---
I live in So. CA, so I'd never be able to give up sandals. I pretty much wear them all year round. But I think, if one is worried, there are lots of style options that are safer-- a bit more covered and protected, anyway. I like a bit of that anyway--more support and just safer. I've stubbed my toe wearing soft things like crocs and zoris/flip-flops, so while I still have those, I prefer wearing something a bit more protective!
0 -
I am doing physical therapy, for my sore back and also for balance. Had tried in the past but the PT person was a looser. This time I found a good one! yeah and think I am improving but yesterday she made a comment about a cane. Troubling and I told her my goal was to avoid a cane for as long as I could but I do have a 2 story house that also has stairs to come in.
dang it all
0 -
I got a neuropathy in my toes after the final CT infusion. Can't wear shoes as the tops of my toes hurt even with the sheet on them at night, and the ball of my foot and bottom of my toes feel like they are full of novacaine. Wearing sandals so there is no pressure. Hoping this isn't long term. Also the tip of my tongue burns. My MO said she stops chemo and switches to another type if people get a neuropathy so she acknowledges it may be an issue. I am using a hiking pole so it looks sporty instead of a cane. When I had foot surgery in the past and balance was off I tripped and broke my nose. Safety is better than vanity
0
