Vent about Permanent Neuropathy
Comments
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I hope this is the right place to ask this. In what percentage of chemo cases is neuropathy permanent?
I'm so sorry you all are having to go through this. I hope having this forum offers some measure of comfort, though physical comfort would certainly be better!!
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Bosum would you have done anything different if you'd known about the potential permanent SEs in advance?
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Hi there! Something made me look at this thread today. I first posted in May 2012 re my neuropathy. Fast forward almost three years since that post ... (Yay, by the way) ... I got on the Neurontin and it changed my life. I will NEVER miss a dose. My Onc started me at a very low dose - 100 mg 3x a day. It helps with the daily pain and especially the cramping. Last summer I got shingles and the ER doctor recommended neurontin. When I told her I was already on it and what I took - she said "double it". That was the only good thing about the shingles, learning that a higher dosage improved my symptoms. So now I take 300 mg 2x a day. Anything more than that and I get even stupider than I already am from chemo brain & Tamoxifen. I was right about one thing ... this is the new normal. I was so strong physically, and could walk for miles. No more, and it really just SUCKS. My legs look like an 8-year old with road rash (from all the trip & falls). LOL!
BUT ... I'm here. Thanks for the fellowship on this topic.
Debbie
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BosumBlues - Right on girl, percentages, schermentages. When the docs tell you about your chemo drugs and potential size effects, they don't tell you much because not everybody gets the same SE's, and they don't want to freak you out. What I just did not comprehend was that if you are in the 1%, or 30%, or whatever - well it is 100% for you! Between lasting SE of chemo, and the other pharmaceuticals they throw at you to fix SE #1, then another drug to fix the SE from THAT drug ... I call it the Big Pharma roller coaster. And I want off. And God forbid if you have issues NOT related to cancer - like high blood pressure or high cholesterol ... oh my, what a statin drug does to your muscles, especially legs. I believe my neuropathy to be "permanent". All the Neurontin does is keep the wolf at bay so I can get around. No more long walks, no more boots or high heels (sigh), no more of my beloved Clarks clogs. Yup, all I can wear now is granny shoes (no offense intended here, I am one of you now.) With gel inserts.Thanks for listening to MY rant of the day!
Debbie
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Bosum - right on - I don't have to shave often either.
Yes, Bosum is right. 30% have no improvement. 70% have some improvement - how much is an individual thing. The time I've heard from my neurologist is 2 years. Others have heard 3 years. But I wouldn't have changed my treatment either. I'm walking around w/o a cane on everyday business, but use a trecking pole or a hiking staff when I'm out just walking. I'm not on any drugs because the numbness overshadows pain. As/if the numbness decreases - we'll see. Right now my thighs are so sore from working outside Wednesday and PT Thursday that I can hardly get up from the toilet. Ugh. It's so hard not believing I can't do what I 'used ta could'.
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I would have changed my treatment. Looking back, I wish I would not have had six infusions with a platinum-based drug. I should have stopped at five. Then again, I have heard that by the time you feel the neuropathy, it is already too late. The weird thing is, that initial "temporary" neuropathy did resolve...only to become this permanent kind about six weeks PFC.
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I'm in my 5th round of 6 of TCHP (Taxotere, Carboplatin, Herceptin and Perjeta). I was getting severe SE (diarrhea --> dehydration, so that I was hospitalized during the first two cycles and now have home IV drips over subsequent cycles). So I hadn't been paying attention to other SEs...
About a month ago I caught my toe and tripped and fell, twisting my ankle. It got swollen and bruised, but I just wrapped it and could walk on it... but after I stopped wrapping it up and the swelling went down a bit, I discovered that the top of my foot was numb and I could not lift it at all-- basically I had drop-foot... I finally mentioned it to my MO and he sent me to a Podiatrist to get it checked out. The Podiatrist was puzzled and immediately sent me for an MRI, where he didn't see anything glaringly out of place. He and my MO then sent me the next day to a Neurologist.
The Neurologist said he didn't think it was actually caused by the ankle injury... He thought I was gradually getting neuropathy from the chemo (I also have Type 2 Diabetes, and that can also cause neuoropathy, but he said the chemo alone could do it). He said I probably tripped in the first place because the nerve was beginning to cause the drop-foot. (which kind of made sense, because I usually don't trip and I did weirdly catch my toe and fall).
I hadn't been having any nerve pain at all, so I thought I was OK, but apparently that nerve running on the back and outside of my leg that controls lifting the foot has been blocked.
He wants to do another test on the nerve going up my leg and to my lower back (Peroneal nerve)... but my PPO might not cover it and it could cost over a thousand dollars. Bleh.
He also said there aren't any obvious ways of treating this. Maybe try some homeopathic stuff like Tumeric. He also mentioned a study where they used light waves to maybe help control the nerve damage... But he said my MO didn't really believe in it. Those treatments wouldn't be covered by insurance, either...!
And I should see the Podiatrist about getting a brace so I can walk more easily (with the drop-foot, I'm having to lift my foot by the knee to make sure I don't catch it and trip and injure it again).
GAH.
I had no idea this could happen. When they warned me of possible neuropathy I thought it was tingling and nerve-pain, but I really didn't have any of that.
I still have another cycle of chemo to go. My MO had already lowered the taxotere dose after my first cycle because of the D&Dehydration...
*sigh*
Well, it's the weekend now, so not much is going on, but I'm going to have to get ahold of the podiatrist so I can at least get a brace in the meantime... and see what the other docs have to say about all this. Maybe nothing at this point, though...!
SO... I thought I was losing muscle tone in my legs because I was stuck with the IV drips and not able to move around enough... but could that be due to neuropathy, too???
I obviously don't know enough about neuropathy... This has all come as a big, unpleasant surprise...
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April25, I don't know about the other drugs but about 5% of people on Taxotere will also experience myopathy or muscle weakness. They don't know if it is muscle damage or damage from the nerves to the muscles but think it is likely muscle damage. There isn't that much out there about it, I just found from personal experience that although exercise was good for a lot of reasons, pushing the muscles to fatigue after my myopathy developed was a bad thing, they didn't recover as well and it set me back in the long run. It is something that a lot of trainers and physicians and nurses without a lot of experience dealing with long term chemotherapy side effects didn't get. The common wisdom with chemo now is that exercise is good. Same with preventing side effects from hormonal therapy etc. And I'll agree with that, I just found my old ideas of exercise went out the window and I had to pay attention to what the neuropathy and myopathy would let me do. Once I learned how to work with the myopathy and let a lot of other advice go in one ear and out the other I finally started doing better.
rose50, sorry, don't know anything about CBD oil
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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...?
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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
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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
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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.
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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!
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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.
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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...
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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....
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Thats where I am at too!
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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.
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I was not advised otherwise, but I can see the logic behind that. Thanks for the info
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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.
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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...
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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.
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Several pages back I posted a review of what studies had shown so far with what did and didn't help with neuropathy.
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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!"
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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.
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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!
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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.
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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.
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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.
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crappity crappity, that made me smile
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kmmd - I like your spelling better than mine.
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