Vent about Permanent Neuropathy

I like the crapity!  any spelling is good, it may be my new fav way of swearing

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

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

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

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 walking

BosumBlues --- Great to hear that yoga is improving your balance!

I should probably look into doing that when I can...

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.

 

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.

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.

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...

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:

http://www.amazon.please m/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=wooden+feet+massager

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.

*********

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:

http://www.ncbi.nlm.nih.gov/pubmed/24352178

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!

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.

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!

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.