Vent about Permanent Neuropathy
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April25 it's true exercise does not seem to be helping
i was hoping it would - he could not give you any suggestions now? doctors... I had a knee replacement years ago & am sad that i am back to not doing things that require too much walking0 -
I have heard that yoga helps with balance, guess I should check out the classes at my gym, think there is one for beginners
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BosumBlues --- Great to hear that yoga is improving your balance!
I should probably look into doing that when I can...
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Hello everyone,
I'm truly sorry that as a result of chemotherapy, many of you here have suffered different side effects, especially neuropathy to your fingers and feet. That's the worrying part for me too as I'm undergoing chemo now...
Since this thread talks about neuropathy, I am currently taking precautions BY icing both my hands and feet in cold cold water during infusion. It has been scientifically proven to reduce neuropathy. Not sure why your medical onc never told you about this.
HOWEVER, the main reason I'm here is to provide a possible suggest that may help members here who've Got neuropathy. I rerepeat, May, and you could try to see if it works for you.
I Have attached a picture here of a wooden hand and foot massager. According to TCM (traditional Chinese medicine ), massaging ones hands and feet over these back and forth at least 20-30 mins twice a day can help stimulate The nerves. I realize there will be members who are skeptical. This massaging shouldn't cause you any harm.
When you do it the first time, you may not feel Any tingling sensation.. so, You may wish To apply some massage oil onto your hands ,and move it up and down Or back and forth.. Try doing it everyday for about two weeks and see what results you get. IF You gradually feel your sensations coming back, continue doing it With more frequency.
Don't give up and all the best... I too will be doing it 2-3 times / week during chemo, in addition to icing. All the best to you.
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Hello everyone,
I'm truly sorry that as a result of chemotherapy, many of you here have suffered different side effects, especially neuropathy to your fingers and feet. That's the worrying part for me too as I'm undergoing chemo now...
Since this thread talks about neuropathy, I am currently taking precautions BY icing both my hands and feet in cold cold water during infusion. It has been scientifically proven to reduce neuropathy. Not sure why your medical onc never told you about this.
HOWEVER, the main reason I'm here is to provide a possible suggestion that may help members here who've Got neuropathy. I repeat, MAY, and you could try to see if it works for you.
I have attached 2 different pictures below
of the types of wooden hand and foot massager you could use. The top one can be used for both hand and feet. The 2nd one, better for hands, and the 3rd colorful one, for the feet. According to TCM (traditional Chinese medicine ), massaging ones hands and feet over these back and forth at least 20-30 mins twice a day can help stimulate your Nerve meridians. I realize there will be members here who are skeptical. This massaging shouldn't cause you any harm.
When you do it the first time, you may not feel any tingling sensation.. so, you may wish to apply some massage oil onto your hands ,then move it up and down Or forward/backward.. Try doing it everyday for about two weeks,, though 4 weeks is preferably, and see what results you get. IF you gradually feel your sensations coming back, continue doing it with more frequency. I like the feeling of these exercises.Please Don't give up... I too will be doing it 2-3 times / week during chemo, in addition to icing. All the best to you along this don't-know-what-to-expect but doing-our-best journey...
P.S. I've posted more info further below on icing instructions.
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I have Raynaud's so couldn't do ice. Am putting my feet in a box of dry rice to help the mobility. Squeeze it between your toes and it helps circulation. Just don't plan to use it to cook. LOL
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I hadn't heard that icing helps with neuropathy... most people use it to preserve their nails. But it makes sense. I mean, if it keeps the chemo from messing with hair and nails, then it should help with other SEs of chemo to those parts as well.
My MO isn't into doing icing. I never see anyone in the infusion center icing. I think it's cool that some doctors and centers are supportive of icing, though, and some even help provide caps and gloves, etc.
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NAT SG How kind of you to stop in and share your experience. We all hope you are in the larger group of women who don't experience neuropathy or for whom it is a transient issue. I hope the icing works for you, best of luck
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I always thought the "theory" of using ice was that it constricts the blood vessels, thereby limiting the amount of chemo circulating to the extremities (and not too risky to do so, since toe and finger cancer are almost nonexistent.) This is something I could not do (because of kind of chemo I got) and I am not sure how successful it actually is against neuropathy. It does seem to have some success preventing hair loss.
I do like going barefoot, although that seems to highlight the numbness more. Wearing shoes makes my feet feel more like feet.
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I agree about the theory of icing for nails &/or hair - and I iced fingers & feet. I did manage to keep all my fingernails, however damaged, and all but one of my toe nails. I haven't heard it helps prevent neuropathy and I got that in feet & hands in spite of icing.
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I didn't ice toes and fingers and so far I haven't lost any finger or toenails... I only just reached the end of chemo, though, so I guess they could still fall off?
Of course, I just found out that I had an incomplete response to chemo, so maybe it wasn't strong enough to mess with my nails? My taxotere WAS reduced due to side effects (which were bad even reduced, so maybe should have just been put back up to regular dose? Oh, well. Might not have mattered).
My neuropathy is mostly weakened lower legs... I'm hoping I can get some of that back, though. I won't really know if it's permanent until I'm further away from treatment...
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Nat - what are those devices called and where do you buy them? Thanks ...
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Hello @syrmom: If you have a Chinatown in an area near you, you can certainly find one. It's usually made of light wood. The ones that are colorful are rubbery plastics. Take a screenshot of the pix in my earlier message and just show it to some shops. If you ask around, some people there can point you in the right direction. It's called Mu-Ban-An-Mo-Ji.
Otherwise, go to link at Amazon.com which sells them:
The foot massager can also serves as a hand massager. My fingers feel tingly at first, but once I got used to it, it actually felt good, at least to me. The amount of pressure during massage is up to you.
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This link below from the National Library of Medicine proved that the use of hypothermia gloves reduces/prevents neuropathy. There were a few more articles I've read on this. That's why I've agreed to do the icing my MO recommended to me. I also drink at least 1.5 liters of fluid during infusion. I think that helps to reduce side effects. Everyday since my 1st treatment, I consume something like 3-4 liters of fluid (on hot days, as much as 5 litres). Sure, I go to the toilette often.. My appetite so far has been good. My tastebuds has not changed either. Don't know if it will be the same down the road...we shall see.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3411307/
I hope these info help those who's still experiencing neuropathy become better. Please hang in there and don't give up on your body....Please take care, and enjoy late spring/summer too along the way.
** Instructions on HOW 2 ICE YOUR HANDS & FEET during chemotherapy**
For those who are curious what I bring with me to the chemo center to ice my hands and feet, here are pictures of items. Seriously, I was the only one doing it that day, and two patients came and asked me how. Then I found out they have the same MO as mine. I printed a color pix of list of items that I will give to my MO so that he can show them to his other patients too. Because I'm a petite person, the chemo sofa chair was too high for me, so I sit the feet basin on top of the Coleman cooler, and the height is just perfect, and I can lean back and enjoy the soak. I wore double layer food preparation gloves on my hands, and those large fruit/vegetables bags you find at supermarkets on both feet. I used rubber bands or velcro to secure feet so water wont get it. The containers are filled 1/3 with water, and frozen blue ice are added to the top & bottom so the water can be cold! cold! cold!. I use lots of blue ice coz I want them to be really really cold. When you buy blue ice, check to see how long each last. Different sizes last different time. I bought different sizes that lasts an hour, 2.5 hours and 4 hours long. You'll need to enlist your attending nurses' help to change out the melted ones when you feel the water isn't getting cold. Luckily my sister brings my blue ice 30 mins before my paclitaxel infusion starts. Yes, my MO suggested 30 mins before taxol, 60 mins during taxol and a further 20-30 mins after taxol is completed. If your taxane infusion (taxol or taxotere is dense dose or longer, remember to take the times into account.)
Wearing the plastics make the soak easier and bearable. If you feel this is too inconvenient, you can always buy hypothermia gloves and slippers from amazon.com. But you will need 2 pairs, and they costs about $100+ per pair (if $ is not an issue). I prefer to go with the cheaper version. It's worked thus far. See pix below.
@april 25: you could also use these same massager and massage along yr lower legs, in an up and down motion for 100 or more times to stimulate the meridians along your legs. I will get a pix of meridian points in English by this weekend so anyone who is interested in trying it out may do so. You really have nothing to lose, and possibly something to gain. AGAIN THE AMOUNT OF PRESSURE IS UP TO YOU AND BASE ON YR TOLERANT LEVEL. Do consider using body or massage oil to help it along the skin.
Update: May 13, 2015. - Hello again, I found pictures showing the meridian points of the body that also stimulates the nerves along those points. Please use it as a guide in your massage.
kmmd - thanks for your kind wishes. Ditto to you too
@april25 - yes, it is truly relaxing once you get used to it. It may tickle your hands and feet at first..do try.
Chloesmom - please consider trying it too since massager is inexpensive. april25 found one cheaply at amazon. see her reply below. Thanks april25.
Another scientific article on neuropathy that seems to correlate to dosage amount of taxane drug use:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4365177/
Below article discusses on how to prevent and treat neuropathy with other drugs:
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Wow-- so interesting to see what you bring in to ice your hands and feet! That's great that you are sharing your info with others at the infusion center and your MO.
I'll think about the massager. It sounds like it would be relaxing, even if it didn't do anything else!
I saw one for $6.50 (free ship) on Amazon--
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just wanted to share - my daughter bought me some gel socks at a book fair & they feel great! have a nice cooling effect - i usually put them on at night for 20min or so while i'm watching TV - with or without my other lotions. They are called Blissful Moisturizing Gel socks - think they are about $10
Happy Friday!
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It seems like I am one of the lucky ones that has neuropathy that is going to stay! I have been off chemo for about two years and my feet are getting worse all the time!I am on gabapentin 600mg 3 times a day. I hate how it makes me feel but I hate the pain more. I am on my feet a lot but it is part of my job that I have to do!I dont think they will ever get better. I truly hope that it does not happen to many but I know it does happen! It really sucks! It has changed a lot of things that I do now. I did have to stop chemo early because of it but I guess not soon enough for me. So I just really had to vent to women that would understand what Im is going on with me! Thanks ! Anne
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Anne - You bet we understand. Thinking of you & sorry to hear you haven't had progression - or rather you've had backwards regression. Vent away anytime.
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Notbuyingit, Although cold weather had my feet feeling achy, I have to say the gel socks sound good because just recently the balls of my feet feel like they have been getting friction burns from my socks. Of course they haven't, but that what my nerves think. Those socks sound soothing!
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Anne --- Sorry to hear your neuropathy is actually getting worse 2 years out from your chemo! I think it's the taxols that are bad that way... My MO lowered my dose of taxotere on my second cycle -- not due to neuropathy--but I was got some neuropathy later anyway.
Mine is not painful, just muscle weakness, which is easier to deal with I think, and since I've only just gone off chemo, I'm REALLY hoping will improve! (But who knows?)
I also have Type 2 Diabetes, and neuropathy is a big risk with that... so there's a chance I can get neuropathy from that! (geesh!)
Vent any time!
There are some new drugs and treatments in the pipeline, so don't give up hope that they might come up with something that can help you eventually!
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I was given gabapentin for leg pain that really was from the statin I was taking. I thought the stupid stuff made me more stupid than I am already! dropped it and then when I changed the statin, all was better
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Bosum - glad to hear the 5 year comment. I'm coming up on 2 years and thought that was the end of possible improvement. I have more numbness than pain so I've avoided the drugs so far. I've resisted throwing out my vast shoe collection in hopes that I'll be able to feel my feet again some day and can wear "real" shoes again.
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Gaba messed up my gut more than chemo. Totally C thought I'd never go again
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Anne, sorry to see you here, but as the others have said, you have a lot of people here who totally understand the frustration of dealing with the pain all of the time.
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In my case, I agree with BosumBlues. My neurologist said "time" is on my side. Thankfully, I don't experience pain, just numbness. Seldom I do get a zinger in my feet, but nothing to scream about. My primary doctor told me to take vitamin B6 50mgs. She said vitamin B6 helps heal the nerves.
Wishing everyone improvements!
(((Hugs)))
Marie
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hello everyone - hope this message finds everyone well and enjoying summer...I just wanted to give an update about my icing....it's going great! thus far, fingers and feet are fine after chemo #5, doing chemo #6 tomorrow.if anyone has bought the wooden massager at the amazon link april25 has listed above, and started using it, would you please share how it is for you? Thank you.
I've been exercising everyday - mostly walking along the river doing arm swinging exercises and talking to strangers fishing there about their catch... Twice a week, I go to zumba classes by the Stadium where free classes are offered....I am totally bald headed now...it's as I imagined it to be so I didn't mind it for now...thinking of the light at the end of the tunnel every day
Once more thing:
A relative of mine told me that her hands get numbed every morning. Though it goes away by noon, she started using the electronic wave pulse foot massager on her hands She said that she does this every morning by placing her hands over the nodes for 20-30 minutes. Now, her hands do not experience the loss of sensation every morning. Then it occurs to me that for anyone here who does not want to use the wooden massage mentioned above in my earlier thread, you could use this machine instead. Plus, logically if it works on her, it may very well work for those who have neuropathy as it works on the same principle of meridian stimulation.
Here's a link to give you an idea on what it is.
http://www.crazysales.com.au/online-electromagnetic-wave-foot-massager-with-waist-belt-73361.html
Have a great summer everybody...
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Question: does the pain with your neuropathy come and go? My feet are numb all the time, but the pain is intermittent. Sometimes they feel like I'm stepping on sharp rocks. Sometimes there is no pain. Doe yikes the soles of my shoes are too hard. Other times they are too thin and the floor hurts and I need the thicker harder ones.. I keep changing shoes. Is this typical?
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Cloes, your description sounds like mine. Times it feels like Arnold is crunching my toes with his big hands! Right now, they just feel numb, not hurting but it is just morning and I have not done much walking yet. Trying to find something to provide relief. Dang but I went on a day trip last week and walked around Cape May, lordie but that night my feet were dreadful. I am trying some suppliments to see if they help at all
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While I have mostly had numbness, in the earlier days I had the crushed feeling also. My feet felt cold and crushed (but it was Winter then, so maybe the cold was part of that.) Lately, sometimes after wearing shoes and socks all day, I might feel a burning type sensation on the bottoms of my feet, like on the balls and toes where I am numb. I don't know if the light friction of the socks is getting to me, or what, but I know it is time to take the shoes and socks off. Then, I am o.k. again.
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eli, do you see any doc about your feet? I am holding out till my next apt with my PCD to talk to her about any suggestions. Dang but I never had chemo and only the AL
actually relieved a bit to hear that you have the crushed toe feeling~~least I am not nuts
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proudtospin, Two years ago, at the onset of my CIPN, I told my MO nurse practitioner about it and she would have referred me to a neurologist, but I said, "They have no cure for CIPN, so other than verify and perhaps label the type of CIPN I have, they can't fix me either, can they?" She mentioned drugs for symptom management, which any doc can Rx to you, so I never took it further. In my case, why? I knew I did not want the drugs. Gabapentin does not agree with me. I asked for some PT. They did order it and I went for about 6x of the anodyne therapy. That's a machine that has had some effect with diabetic neuropathy. Hard to say for certain if it helped me. My acute CIPN phase passed after a few months and the "healing" began, was it the therapy or just TIME? I think probably time.
Now, almost 2 years out (and summer,) I am not too bothered by what remains. My numb areas have enough feeling to know that they are numb. As dumb as that may sound, that really is about the size of it. I can feel some tactile sensations but I have areas that are oblivious to hot and cold. I don't have balance issues, occasional discomfort but not pain, and I do everything I would do with normal feet, even tho' they are not. So, I am one of the "lucky" ones. Hummppff! (That is my utterance of being sad and p.o.'d just the same.)
p.s. The crushed feeling? I always said an elephant was stepping on my toes. So, you are only as nuts as I am. (Uh-oh!)
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