Vent about Permanent Neuropathy
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thought I'd post - have a BC friend who is in a trial at Fana Farber for accupuncture for neuropathy. She's seeing results so far. I might try to find a local practitioner and give it a whirl
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formydaughter - please keep us updated on your friend's progress w/acupuncture. And let us know if you try it.
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I've posted on this topic before, but many pages back.
I had 12 sessions of acupuncture at Dana-Farber. It was wonderful and calming, but had no effect on my neuropathy. (It did help my arthritic knees a bit, though.) If there's a current trial, though, they may be exploring a new protocol. And who knows? Trials bring us new benefits all the time.
So please keep us posted on your friend's results.
Ann
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I haven't posted in a while either, but wanted to add my update....
I agree with others that time helps ( a little ) and cold weather hurts (a lot). I am two years out from chemo and I have about 80% improvement in my right foot... most of the time it seems almost normal. My left foot has improved some... maybe 50%, but some days it still feels as bad as ever. Some times the numbness goes all the way up to my knee. However, overall some improvement. But as it is winter and snowy here in Denver part of the time, the cold absolutely makes it worse. We are headed to the mountains this weekend to cross country ski and snowshoe, which I LOVE, but I am already dreading the way my feet are going to feel.
I should add that my fingers are almost 100% better. I have full function, although my "penmanship" is not what it used to be...I don't think that will ever come back...I get stiff and sloppy after just a few lines.
One other thing that I may have mentioned here - with the support of my oncologist, I am taking a little "vacation:" from my Herceptin/Perjeta treatment. I haven't had an infusion since September. I have a PET scan next Thursday and of course, I am scared to death... but the side effects - outside of the neuropathy, were getting so bad for me that I made a quality of life call and decided to give my body a rest and a chance to heal and strengthen, which I think I have done. I really think that the continued infusions were contributing to the neuropathy as well, and that stopping them helped. We'll see what happens when I resume them.
Also - massage absolutely helps. I have started getting pedicures by a woman that used to do reflexology massage, and every time I go for a pedicure she spends about 40 minutes massaging my feet....I swear, they feel totally better for days afterwards. I think it is what someone else mentioned - the circulation - getting the blood pumping really helps. She said that she can feel the parts of my feet that are the worst (and she can) and the parts of my legs that are because the muscles feel different... they are bumpy instead of being smooth. She points out where she feels the bumps and it's definitely the numbest parts.
Thanks for letting me vent! I know my poor husband gets tired of listening to me!
XO
Andi
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Andi, sounds like you are really benefiting from massage. I used to do massage on my leg where a muscle had knotted up. I remember telling the masseur that my leg hurt and she was able to ID the muscle immediately. Congrats and good luck with it.
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wow Andi - that is amazing that the muscles feel different in the worst parts. I had no idea this was possible. Since its a nerve condition, I'm amazed that there is evidence in the muscles. I'll have to check me. I agree that massage helps in general! Wish my insurance would cover it, as it is such a healing treat,
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having used massage for dif issue, man o but it is worth paying out of pocket, not sure us rookies could find the correct muscle but the pros sure can
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accupuncture didn't help me either
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kmmd - just a note that I watched the youtube again and can't get the song "keep breathing" out of my mind. Wonderful goal.
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It really spoke to me too minus two, that and her song I Just Want To Be OK
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random: did i mention on this sight that Vicks vapor rub feels great on my numb screaming toes? just tried it again (cuz i had it out for a cold) and forgot how well it works! just had to share
warm weather & getting out of these socks!! bought some diabetic ones for work today - probably not much different but, hey, you gotta keep trying, right?!
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Wow, thanks, i am going to try some vicks tonight!
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The cold is not actually hurting our feet, but those poor, dumb, injured nerves are so mixed up that when they get cold, they cannot correctly communicate COLD to the brain; instead the message is PAIN. These nerves need to WISE UP and I'm tired of them being such SLOW POKES about it!
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sad to see not too many new posts here! always looking for new things to try
i went back down to 6 hr work days & am trying to go to the pool at least 3 times a week - they have bubbler benches where i can put my feet in the stream - kind of hurts a bit but hoping it helps wake up my nerves.
been feeling like my feet hurt more & am not happy about it - the numbness seems to spread up in to my calves now - scary stuff - can it actually spread? here i am hoping it will go away not get worse!
probably has been discussed here before - but when do you say you have "permanent" neuropathy? my doc had told me after 1 yr - but i have also read sometimes it takes 2 yrs to get better?
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Notbuyingit, I was told permanent, and some days are better than others, just not today. I also take meds for it. But I also rub Vick's on my feet and cover them with warm fuzzy socks. I also use Foot Therapy, a mineral soak from Sally's. I use warm water and let my feet soak about 20 minutes, then do my nails and moisturize. I have success doing that. My feet still tingle and go numb but not as often. I hope it works for you.
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I have had neuropathy for the last six years. Hands and feet. Was on Lyrica for 4 years and it did help. I had to stop taking it due to some of the serious side effects I was experiencing. My Dr. doesn't have any suggestions for me other than going back on the Lyrica which I took twice a day.
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thanks for the responses! i will keep hoping for some recovery! i'm a little over a year out from my last chemo - and didn't start experiencing it til after i was done - i do also have arthritis in my feet which doesn't help.
Vicks is one of the variety of things i put on my feet @ nite with fuzzy socks
helps to calm them down trying to avoid the Lyrica - have heard there can be some nasty side effects - and just don't like taking meds in general - I am taking B supplements, lipoic acid etc.. not sure if they help or not
the Foot Therapy sounds good - tho the warm water soak has not worked for me like it used to before the nueropathy - i have tried iced water soak for shock treatment lol but didn't keep up with it for long!
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NotBuyingIt - I went to a neurologist shortly after I finished chemo. She said 70% of people with CIPN get 'better' over a 2 year period (not back where we started but better than we are). I'm 18 months post TCHP. I'm finding a little more feeling in my toes & balls of my feet. Not sure if this is good since more feeling may involve pain & so far I've just been numb. I do notice numbness creeping up my calves some days & other days not so bad. Some days my fingers seem to have more feeling but some days I'm trying to decide if the hand problems are neuropathy or lymphadema that's progressing. Of course that means 30% won't see much improvement. I'm glad Bosum said 3 years. Maybe I won't give up quite so soon. In the mean time I'm hanging in there w/o meds. And here's an exciting tidbit - yesterday I was able to put both legs in my pants (separately of course) w/o sitting down or balancing on a counter or chair. Usually I can't keep my balance w/the neuropathy in my toes & feet so that called for a celebration.
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Hi Minus Two
Yes, cause for celebration, I still need to "butt' up to the bathroom counter or the wall, to put on pants, or go sit on the bed to do it, like you I have more numbness that pain, have pain when my feet get too warm only, odd, still don't know where the neuropathy came from as I did not have Chemotherapy, just lumpectomy and rads, and only one side, the neoropathy is in both feet, hands seem ok, I tried gabapentin, thanks but no thanks, has it's own side effect that I did not like to experience.
Had only one incident of truncal and arm LE, luckily was visiting in a big City, so could find LE therapist, get it under control, and now know when to wear my sleeve, and what not to do.
Argh, BC, the disease that keeps on giving, yet I so appreciate I am still here to rant about it.
Be well,
dsgirl
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That is good news, MinusTwo! Baby steps (no pun intended.) Last week, I could feel HOT water on my right big toe (the worst numb spot) just a tiny bit. Of course I had to leave my foot under the nearly scalding water for 10 seconds (or 9 seconds too long for a normal person.)
I agree that the pain is part of the regeneration process. The thing is, the nerves are rewiring themselves but they are pretty screwed up and I don't know that they are doing a good job of it. The nerves that "come back" still send messed up signals (IMO) like pain where there should be none. However, they might start to "relearn" the signals properly over time, and the brain is pretty clever about compensating for things. I am a year and a half out, like MinusTwo. I'm at the point where my feel-nothing numb areas have gotten a tiny bit of feeling back---just enough to know they FEEL numb. Those silly nerves!
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Bosum - if I can get all my LE gear in place and find someone to lift my suitcase into the overhead bin, I'll march off the plane one day with my own cane and take you up on it.
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Hi Ladies,
I don't seem to be in as bad a condition as some of you, but I do have numbness (no pain) in the balls of my feet. I also have the numbness around my face. It used to be around my lips which over time it went away - yay. It felt like dry milk - ugh. Thankfully, that is better. Most annoying is around the sides of my face and around my eyebrows.
I took vitamin B6 during chemo. Then my MO said I could stop taking it when the chemo was over (Aug 25th). I still have this numbness, but I do sense a slight improvement. My internal medicine doctor told me to continue to take vitamin B6 50 mgs not 100mgs. She said it does repair the nerves. What vitamin B's are you taking that you see a better improvement? I used to take Lyrica, but stopped. I didn't get much improvement from it. I also see the Neurologist every 3 months, but he just said "time" is on my side.
Thank you for any input you can give.
Marie
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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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