Vent about Permanent Neuropathy
Comments
-
I'm bumping this in hopes that those affected will read my post just above and remain hopeful for their own healing.
0 -
Eli - how nice to see you. Hope all continues to go well. Miss ya.
0 -
I already have peripheral neuropathy. Now I am going to have chemo neuropathy. This is scary, but to go through this with a reasonable assurance of fifteen years more of life (68 now), it is worth it. I know that it heals slowly, to the point that it doesn't seem like there is any progress. I have asked for a referral back to neurology, but they are one short, because the one I saw has retired. If there is some way to prevent further loss-- but the icing hands and feet is going to set off aches, and the devices that do it are apparently quite expensive.
0 -
I am sticking with Lyrica
0 -
what is the dosage schedule? I take two 300 caps of gabapentin in morning, two at two pm, and three at bedtime. Often I miss, particularly the afternoon dose.
0 -
McBaker - it really makes a difference to ice your hands & feet. Start 30 min before & keep it up 30 min after. I used frozen peas in zip lock bags for my hands and put my feet in coolers with ice bags. The nurses brought my extra bag of peas to switch out 1/2 way through. Yes - it was FREEZING. I wear turtlenecks at 75 degrees and often have gloves on in my house at 70. But I shudder to think how bad my neuropathy would have been w/o icing.
0 -
I will be discussing it with them. My right ankle is getting rubbery again. I thought I would be able to get through the winter with just boots, but may have to go back to my New Balance shoes with AFO.
0 -
The perfect idea one time I gave my son a bag of peas for his ear because he had things it into something. He ate the peas once his ear was feeling better So I guess you have a snack on the way home 😊 I wish I had posted here I tried this method during chemo because I have terrible neuropathy in both my hands and feet
Which part Of the therapy did they recommend it.I have ice in my mouth during taxotere or maybe it wascarboplantin.
0 -
I was told to ice during taxotere and to keep the cold on for 30 minutes before & after. I've since read things that indicate carboplatin may be a problem too, but no way could I have kept the cold on any longer.
For that same reason (in addition to the cost) I didn't choose to cold cap. Luckily my hair grew back with the addition of Biotin to my vitamin stash.
Eeeuuu... No way would I have considered eating the peas after dragging them back & forth for 6 treatments with the thawing & then re-freezing in between. I bought the cheapest peas I could find and put them in zip lock bags - well marked. I was never to happy to throw something away.
0 -
Has anyone "enjoyed" a dramatic increase in neuropathy many months after your final chemo treatment? Although I still had numbness up to my shins, my finger tips and nails felt numb and stepping down a curb remained scary, I felt like I'd made significant improvement in the months since I completed treatment. Then suddenly, the neuropathy in my right / dominant / non- cancer side hand increased dramatically...numbness, tingling and decreased grip strength. 😣
As an aside, this started after a shingles attack, but that was on the other side of my body. Probably a coincidence? My GP said a pinched nerve was unlikely based on my symptoms.
I already take Lyrica for severe Fibromyalgia. After 142 medical visits over two years with cancer and spinal / SI joint issues, I'm reluctant to start down the rabbit hole with neurology visits. Any ideas, folks?
Lyn
0 -
bye yes if you read about the neuropathy webinar on the home screen the doc talks about neuropathy that kicks in after chemo. It has a name and it is something to do with the damage to the DNA from platinum therapy at least if I am recalling the details.My neuropathy in both feet and especially hands came on 3 months after chemo.
0 -
Mine started after the 4th round of TCHP. The doc said he could decrease the dose for rounds 5 & 6, but based on my cancer, he preferred to continue with full strength. My choice was to go for it. As it was, I still didn't have pCR and had to go back for four rounds of AC chemo after my surgery. The CIPN got worse for awhile - or maybe I was just learning how to cope. Then it seemed to back off some - particularly in my fingers. Now 4+ years later, most of my feet are still numb and it climbs up my shins at times; and my fingers are "almost" numb or have diminished sensation. I can at least do up the zipper on my pants (which I couldn't at first) but I have trouble swiping phones & tablets or picking up coins off a table. I continue to be grateful that I don't have much pain.
0 -
My occupational therapist says to get a pan of beans, corn, rice, or something like that, and move your hands around in that. She had one with pinto beans and some marbles in it, probably for the client to close her eyes and pick out the marbles. Knitting or crocheting or something like that is also recommended. I have four bags of rice and beans for nuking for hotpacks, overkill. I am going to empty two of them for stimulation. I remember when I was younger, typing made my hands feel more alive. Same principle. For neuropathy, use it or lose it is really applicable.
0 -
I have been miserable as of late. I have many worries and I suspect stress is a huge factor. Lately when I walk or stand it feels like my legs are so shaky and weak. I have been here before and thought I was going to be wheelchair bound and then had significant improvement. This is just the damnist affliction but when it acts up like this it is frightening.
MCB, my mother had occupational therapy for arthritis and they had her doing the marbles.
Minus, I thought of you yesterday. I was driving and at a red light I thought I was applying my breaks but my car wasn't stopping. Finally I slammed them on but it was strange in that I could not feel the pressure I was applying. Obviously as of late my feet are numb. Do you have difficulty driving?
0 -
Thanks for the input, all. The marble / bean idea is interesting. I'd wondered about the putty that you squeeze.
My neuropathy started during my Taxol infusions. I also has Adrimyacin (sp?) and Cytoxan, but no platinum drugs. I had re-read the seminar transcript, but don't recall him mentioning a sudden worsening so many months after chemotherapy concludes, particularly with the AC+T protocol.
NotBroken, my mom had similar issues from cardiac-related neuropathy. For some time she was able to drive during low traffic times and chose routes with lower speed limits. Seeing one's independence in jeopardy must be very scary. I'm sorry this is happening to you.
Lyn
0 -
NotBroken - So sorry to hear about the recurring leg weakness. Is it worth talking to a neurologist again? So glad you were able to stop the car. I don't have trouble driving but I too have looked for other routes. I really don't want to drive in construction zones - particularly in the rain or at night - so back streets have become my friends.
My physical therapist gave me a container of stuff like Silly Putty that I was supposed to squeeze. And she told me it would be good to play dominoes for pennies to I'd have to pick up both the tiles & the pennies.
Happy New Year to everyone. May the side effects diminish - even if they don't go away.
0 -
NotBroken, I have some neuropathy caused by chemo, and when it was at its worst I could not safely drive and so had to have someone else do whatever driving was needed. As you described, the problem was that I had problems operating the pedals of the car -- I felt that I was pressing down on the brake pedal, for example, but the car was not slowing as much as I had intended. Part of the problem was that my feet were partially numb, so it was difficult to get an accurate "feel" for how much or how little pressure I was applying. But a bigger part of the problem, I think, was that at that point I was so weak that I was physically unable to put much pressure on the pedals even though I felt that I was making a good effort. You mentioned that lately your legs have been very shaky and weak, so I wonder if weakness is a part of your problem as well as the numbness. If you haven't already done so, perhaps you could talk to your doctor or a physical therapist about the weakness to see if something could be done about it. I know you said you had had significant improvement when you were shaky and weak before, so perhaps you can figure out how to do it again. I wish the best of luck to you; I know how frustrating and scary it can be when you can't do the things that you want to do.
0 -
I have an electromyogram scheduled for the twenty-third. I have a baseline one from two years ago. Still frustrated because the Neuro SE are affecting me more severely than those in the weekly taxol group. But there is the positive that I am feeling pretty good today Monday the 31st, with my next chemo scheduled Thursday the third.
0 -
McBaker - definitely do talk to your doc before the next chemo to see if he/she wants to consider reducing the dose.
0 -
Planning on it. The issue came up during my visit with breast surgeon. Gotta have my list of concerns. Need to keep up with my journal, too.
0 -
Hi, has anyone tried Horizant? I was having so many problems with my feet and went through high doses (2,700mg/day) of Gabapentin, then Lyrica, and am now on Horizant (600mg/day). It is a slow-release Gabapentin, really. It is so wonderful. I sure notice a difference when I don’t take it.
0 -
It is so expensive, I doubt my insurance would approve it. I am on 2100 mg, and the sheer volume of it in my pillkeeper is irritating. I have my kindle, fitbit, and computer set with alarms, so rarely miss a dosage, unless I am out and about. Even though I carry my 2:00 pills with me. I may ask my PCP, though.
0 -
LuvMyFam - does Horizant make you drowsy?. I have been on Gabapentin for a couple of years, initially to treat migraines, then neurological damage from feet surgery and now to help with early menopause side effects and chemo neuropathies, but I can only tolerate a low dose and at night time because it knocks me down
0 -
Just a little update. I started a plant based diet but at close to the same time I also started acupuncture for my feet at the cancer center. I have had tremendous improvement. Now my feet do not wake me up at night and I get a bit of a buzz in them and some occasional numbness but hardly noticeable. My hand are improving as well but not to the same degree. Still I am very impressed with the acupuncture it might be worth looking into if you have this in your area.
0 -
Guru, that is great. You are blessed to have a good acupuncture practitioner around!
YiY-no, it does not make me drowsy. Maybe because of the time release? It is expensive, my portion is $150/month! But, it is so worth it! My doctor made a deal with a local pharmacy to get it at this price
MC-My insurance covers it... my portion would be $1600/month
0 -
I think that I'm new to this group/thread. My chemo ended last July, but the neuropathy began soon after the first infusions. I went to some specialists, but I'm currently untreated. I did go through some PT last year, but I wan't really receiving any benefit from it for the neuropathy. I have numbness in both feet, some tingling and the rare pin/stab pain in a toe, now and then. I also get foot cramps which sometimes happens when I'm driving.
As for diabetes, I'm borderline and the bloodwork is odd. I get good readings when I eat (test 2 hours after meal), but after fasting, not so good. So I'm trying to eat smaller, more frequent meals to not have to fast so long.
Going down stairs can be a little tricky too. I don't feel confident going down without stopping at each step. the knees feel a little off and uncomfortable. Is that possible with neuropathy, or could it be something else? The hands also cramp up a bit if I'm typing a lot at work or hand writing, especially. And now for more fun, both hips are feeling iffy, whereas only the left one was a problem before.
I'm thinking about buying a stationary bike or exerciser. Bad idea? While in physical therapy, it didn't seem to hurt while using it. Any thoughts would be fantastic. Thank you.
0 -
I have a free gym membership through my insurance. They taught me how to use three-pound weights, so I do that at home. At the gym, I use the treadmill. I hang onto the rails, otherwise I frequently lose my balance. I can even get some aerobic at 2.5 mph.
0 -
sweetpea - There really is no 'treatment' for neuropathy other than treating pain if you have that. PT is useful in learning how to compensate for lack of feeling &/or balance. My doc has me on magnesium for foot & leg cramps - 250 mg twice a day. Like McBaker - I go to a local gym. I walk the treadmill & ride a stationary bike, but mostly attend Silver Sneaker's classes twice a week. Exercise is usually good but check with your doc.
0 -
sweet pea
I think a stationary bike could be great since you won’t have to worry about balance throwing you off so much.
I did do acupuncture early on when I was painful and it was helpful. But a lot of it I think is just time as you keep plugging along with exercise and good diet. I switched to an all plant based diet recently too and feel much better.
I went to a brilliant and experienced PT for my breast reconstruction, he told me PT wasn’t going to offer me any added benefit. I’m pretty lucky because my pain is gone. I just get some heaviness in my feet and light tingling in my fingers. I’m sixteen months out of chemo.
According to my MO it could take years to go away completely. I’m glad I stopped dropping my cellphone an I stopped tripping up the stairs.
0 -
RE: exercise
I like my deep-water aerobic exercise routine, vertically in the deep end, head out of water. Walking, x-country ski moves, all upper body and lower body muscles can be worked. I use ankle cuffs (the necessary vertical stabilizing works my core) + foam barbells, and I go through every muscle group, and also get aerobic work if I speed it up. I have some knee and hip arthritis, and I had a foot rebuilding (5 fusions) due to mid foot arthritis one year ago. Age 61. Therefore, I’m trying to work out without my treadmill, and avoid walking on concrete sidewalks. I find that the stronger my muscles are, the better my joints tolerate the AI stiffness.
My neuropathy is in my fingers and hands: no pain, but loss of sensation. Tingling. I am taking MO-suggested amino acid supplements. Trying to stay hopeful that maybe my neuropathy will resolve. Grateful that it’s not pain, and also that I can walk okay—I had numb feet during chemo, but not after. Glad to have found this thread, and I’ll keep reading it
0
