Vent about Permanent Neuropathy
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thank you kmmd.
NBI....I sorry I don't know anything Arimidex.
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I have been on arimidex for 3 1/2 years before that Femara and tamoxifen. . I can't say that it has played a roll in making my nerve damage any worse or better. It has affect my bones, tendons, and now I have arthritic knees.
My feet still hurt just as bad four and half years after stopping chemo. Legs and fingers improved but not totally.
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I was on Arimidex for 4 months and my neuropathy got worse during and after this time. I went off off it 3 months ago because of a different side effect. I don"t know if Arimidex caused this worsening of neuropathy or it was a delayed reaction to chemo.
I am going for a follow up appointment with my MO and this worsening of the neuropathy in my feet and worsening chemo brain are at the top of my list to discuss. If I learn anything helpful, I'll post it.
I am considering trying to find an integrative neurologist (combines both complementary and Westerm medicine). A friend of mine with similar neuropathy is seeing an acupuncturist. Some help she reports but not a lot. I'd be willing to try this.
Found two new supplements to add to my arsenal--Omega 3 and Alpha lipoic acid. I am not going to start these until I talk to the MO today.
I am so so angry that BC is still majorly impairing my quality of life even though I've been through with chemo a year and a half ago. I think some of this anger is at BC treatment in general. I didn't have the time or energy to be angry when I was going through treatment to deal with this anger and after treatment I needed to put BC totally (almost) out of my mind for awhile. Now the anger is finally coming up. Of all the emotions, anger is usually the one I try not to feel even though I know this isn't healthy. But now I. Am truly, deeply pissed that BC treatment has not advanced more. It's been many years since the War on Cancer was proclaimed by the US government. My chemo was as old as the hills.
Thanks for reading,
Peggy
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Peggy, I have the same anger about being left with this CIPN, even tho' I am not truly impaired by it. I just feel like I no longer have human feet. Horrible! I've often remarked about cancer treatment still being in the "Dark Ages." That is probably not fair...surely we are at least in the "early Middle Ages" at this point. ;-)
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Peggy & Eli - YES - ANGER!!! My MO always asks about SEs so I told him last Monday that my feet were still numb blocks of ice at one year after Taxotere/Carboplatin & it sure caused a problem getting into the shower. His absolutely sterling advice (NOT) - get a bath chair. More ANGER!! And this is a doc I really do like. And I iced my hands & feet. Imagine where I'd be if I hadn't.
Peggy - my docs said to stop Omega-3 while in active chemo. I started back in January and don't really see much difference. I'm still taking B-6 and B-12 and Acetyl L-Carnetine, which I did take all during treatment. Let us know about the Alpha lipoic.
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i have been taking the Alpha lipoic acid 250mg about a month or so - no significant change - but trying so many things don't know if i could tell for sure. Someone had told my daughter (she's a PT) that it worked really well for them so, as usual, it must be individual.
I was angry from step one - never in my life had i done so many things that felt so very wrong. Where has all the money gone? does anyone know? it's great that they have developed meds that keep the SE's from being as severe as they were - but how about coming up with a better "cure"??? how about finding out what really causes the damn thing?? how about coming up with a test that can tell you if you still have it or not???? maybe cutting off your breast is enough - maybe having chemo is enough - maybe having radiation is enough - NOBODY knows!! so we just keep taking shit on the possiblity that MAYBE it's still there or MAYBE it'll come back - and are ending up with some very real & lasting side effects.
i've said it before: Breast Cancer Survivor? no - Breast Cancer Cure Survivor - where's the T-shirt?
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Thanks everyone for responding. Saw the MO yesterday and she recommended physical therapy for the balance issues. I asked about acupuncture and she said it was worth a try. I asked about a neurologist and she said because my chemo brain is getting worse, that would be something she would think might be helpful.
Did anyone else experience an increase in chemo brain problems at the same time the neuropathy got worse? I've read somewhere that the myelin sheath that protects neurons in both the brain and the peripheral nervous system being damaged as possibly the cause off both.
MO also gave me referrals so insurance might actually pay for some of this. She is a vegetarian whose parents came from India. I like her very much but was surprised that she knew so little outside of mainstream medicine, given her heritage. She is young though and probably totally westernized.
I found an acupuncturist whose father was an MD. I have a diagnostic appointment this Saturday. On the phone when I told him that I had numbness greatly affecting my balance, he surprised me by saying that numbness is worse than pain in PN because it indicated that more nerve damage has been done. He said if I started feeling pain instead of numbness it would be a sign of progress! Anyone else heard of this?
My impulse is to throw all I can at this now permanent seeming side effect. I have all these bottles of supplements I haven't tried except for the B6 and B12 and now an appointment with a acupuncturist. However, if I start all these things at the same time I'll never really know what helped. I've decided to start with the acupuncture for nerve damage and find a PT to work with me on balance issues first.
I think six weekly acupuncture treatments should be enough for me to know whether it's worth pursuing. What do other people think?
It's a matter of money too. I don't want to keep laying out $90 per treatment session when I'm 99 percent positive the insurance won't reimburse.
In the meantime I'll start looking for a PT with experience in neuropathy balance issues that my insurance company should pay some of. I'll work hard because balance is so important, especially as you age.
If the acupuncture doesn't work, I'll start testing out each supplement one at a time to see which (if any) one is helping. I don't want to try 6 expensive supplements at the same time because I'll not know which did what. This is important since we may be looking into a lifetime of taking supplements for this nasty side effect of chemo. June 2015 we retire and our income will be slashed by 50 per cent and we'll be paying for Medicare and Medicare Supplementary plans.
If anyone has persevered through this long post, thanks!
Hugs,
Peggy
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Peggy, I do understand your problem. I just now almost tripped in my kitchen while putting junk away. I did not do chemo, only the rads and just finished up my 5 years on aromasin.
my balance is the pits, few years ago I had a case of vertigo for about 3 weeks till it cleared up. At that time, I had MRI& MRA and all sorts of testing. The doc thought I might have had a stroke or a brain tumor~~fun huh? then the docs said I had water on the brain and needed brain surgery......this from a nuero surgeon who said, don't worry. it is simple surgery and I have done it many times!
I ran to a second nuerologist who found nothing wrong and said I had likely had a virus as it did not return.
Course I still have god awful balance. I have a personal trainer that I have been working with for some time. He has improved my balance and helped to strengthen my core. But he things the problem is in my brain and we are now doing dif exercises to help with my coordination of eyes to feet!
It is hard to know who to see but surely try the referral to a doc. I am now on medicare so my doc visits are covered for now.
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Peggy, Thanks...I had wondered a while back if pain was a sign of nerves dying or of nerves coming back to life. My pain resolved into mostly numbness, so now I am wondering where do I go from here? I did have balance issues right in the beginning for a few months, but either I have improved or my brain knows how to compensate. I do know that the PT can work with you on balance. Good luck with the rest.
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I have heard that about having to stimulate the nerves back to life so to speak - i did try 3 sessions of acupuncture - she also did some deep foot massage which was a little painful - but i have arthritis as well. I could not tell any improvement ( and she said i should) so i stopped (as you say it is expensive) but she did say it helps some people so it's worth a try.
sadly i feel.mine has gotten a little worse
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Hi ladies,
I was interested in this neuropathy Facebook Chat organized by CURE magazine. Some conflicting statements about what I thought and didn't think. Maybe some of you will find it interesting, too:
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oh my goodness, that article is very helpful! thanks for posting. I am doing physical therapy with a trainer at my gym who is trainer to work with cancer survivors. This convinces me that I am on the right track there and need to continue with it.
thanks for the link
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Thanks. Good article.
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HnS, Thanks for posting the article, however they really don't seem to know too much more than what we have discussed over the thirty pages here. In fact, one of the experts (Pam Shlemon) gave erroneous information about calcium/magnesium having a preventive effect when oxaliplatin(*) is used. That has been disproved and was presented at the ASCO convention one year ago. They mentioned the SSRIs and SNRIs in a statement about prevention. As far as I know, none of that is preventative but can help with the pain management. They basically said that some therapies can help some people some of the time. That puts us right back to guinea-pigging ourselves trying for some relief...oh, and get out your pocketbooks 'cause it isn't free.
Don't worry, BC ladies. This is not a BC drug. However, it is the drug that caused my neuropathy.
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I just got back from my training session at the gym, trainer got an earful from my about my achie feet and all. His thought is to massage the feet when they hurt (or before bed) and then ice them
dang if I do not intend on doing that tonight, May also not take my statin tonight to see if that affects the stupid feet
stay tuned for my latest test
oh yeah, got the name of an acupuncturist as well
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foot massage & ice cream!! lol sign me u-p
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oops! i read that too fast!! ha!! i like my idea better!
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well he just said to ice the feet and I was planning on a bag of frozen peas but your idea is better~~
man it can not hurt, thinking I need to start doing regular pedicures?
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proudtospin, Will be waiting to see if the ice is helpful (if you do it) BUT I have to say it sounds very counter-intuitive. Ice is for pain caused by inflammation. My feet don't feel like I have inflammation, do yours? Ice will constrict the blood vessels. I am constantly trying to increase blood flow to my feet, and my thinking is that more healing and nerve growth/regeneration might take place. If he works with cancer survivors, did you ask him if any of them already actually tried icing their feet? Did others report that this worked?
Related to that is that many women on here mentioned that Winter weather made their CIPN feel worse.
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el, good points, not sure if my guy has worked with folks with
neuropathy as I started with him first for LE and then hit him up for help with balance issues! so thinking the guy thinks I am a nut ball at times! but he has me ok on the LE and the balance is improving so.,...so far I have not iced my feet but have massaged them and realize my pain issue is in the toes so sort of massaging them tonight, also thinking I just need to gently walk around bending the tootsies
dang if this isn't confusing!
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Just got home from pedicure #3. This time I got the most extensive one...she did so much to my legs and feet I could hardly keep track. She also used what looked like a cheese grater this time! It took two hours. When she first starts out scrubbing and clipping I want to just out of the chair. But then she does the sea salt, mask, wax dip and hot rocks and massage it relaxes them. The hot wax did not hurt as much this time. My feet feel great. I am going to continue, I really believe the stimulation is healing my feet. Even if it is all in my head...it is working. Their are worst things in the world than pretty feet. I think I have found my cause.
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Eli - Although oxaliplatin may not be used for BC, the platinum category includes Carboplatin and that's what I had with my Taxotere. Double Whammy.
Heart&Soul - thanks for the link. Wish we could get our docs to read it since we usually hear - 'don't worry it will get better'.
You all will love this. My PCP gave me a scrip today for Diclofenac Sodium 1% Gel for my feet which she said is sort of like Aleve. Does she not listen? My feet are not swelling and I don't really have pain - just huge, numb, blocks of ice where my feet used to be. But it may be useful for those of you who do have pain. Link for the product below. My insurance wouldn't cover it, but why would I fill it anyway? http://www.voltarengel.com/consumer/about_voltaren.aspx
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Minus, that sounds like the doc got a sales call for some pharm rep! I have gotten stuff like that from the doc that I just left~~I could give you a list of meds. Like you, I do not fill those sorts of things.
Well my feet are feeling a tad better this morning, gave myself a foot massage last night and also do not take my statin. Thinking though that a pedicure is on the list of things to do. I have a massage set for tomorrow just because~~
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Cold makes mine hurt worse so I cringed at the ice. Then I read foot massage and ice cream and thought I read it wrong. Then went back and saw, no it was foot massage and ice and the post about wait someone else read it wrong and then the post about that's a good idea, and by then I was laughing so hard .....
So, did you end up with foot massage and ice or foot massage and ice cream?
OK, I have a drug name to pass on: zonisamide. It has helped the pain a lot. First one that has really. My pain doc says he's used it a few times when other meds haven't worked. It reminds me of the gabapentin in that it is usually used for seizures and you have to slowly go up on the dose and if you go off have to wean yourself off of it. I'm not pain free, but I'm on my feet more than I used to be and they're keeping me awake from pain less at night -- I'll take it. First relief I've had in years
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km---well I went for massage last night on my tootsies and do think it helped. No ice as I followed the thoughts here. Last night I did my own massage but did treat myself today to a massage from real gal
feet are feeling better, I keep an extra comforter on the end of my bed so it covers my feet and seems to help there
also stopped the Lipitor and planning a conversation with doc on next visit
dang all this junk!
no ice cream, big glass of wine!
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proudtospin, sounds like a good prescription to me!
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just for the record, i did try filling a dishpan with a little water & ice cubes & alternating my feet (couldn't take more than one at a time) it did seem to make them feel better for a bit - but ice cream is a lot less work....and so...
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You must have a big foot.
(Or a small dishpan.) Ahahaha! 0 -
lol! i meant the icing !
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LOL! I have big feet, so it was natural interpretation for me!
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