Vent about Permanent Neuropathy
Comments
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rockymountaingirl, Thanks for your information. I don't think I described things altogether right. I've had a little hip problem for decades, it seems, resulting from an old gymnastics minor accident when I was a teenager. About 20 years ago, I started really noticing it; it felt like the ball might fall out of the socket. Not really, but it forced me not to walk normally. Naturally, my doctor told me that since I wasn't exercising like I used to, I needed to go back to that. So I did and I also used my husband's soloflex. That was helpful then, but it went by the wayside. I also did the treadmill for a while, but lost drive to do it.
Fast forward to 2016 when I had to have a partial hysterectomy with a large scar and all of that went bye bye. After that surgery, I could only sleep (well) in a recliner. After a few weeks, I broke the first old recliner and had to buy a new one. It's not that easy finding an affordable motorized recliner that almost goes flat without tipping over to the back. I digress.
When I went to chemo, I already had problems with my feet and had been to a few foot doctors about it. I ended up with New Balance shoes and went from an 8D to a 9W or 9WW. Once chemo started, I told my MO about the new tingling and discomfort, but he didn't believe it to be neuropathy, at first. I went to a neurologist and others in the field and they came to the conclusion that I had neuropathy of at least the feet and perhaps the hands. They also concluded that one of my discs has a small leak which is causing more discomfort at times. That got me into PT for a few weeks and it really didn't help my back that much. I did not try accupuncture yet, but probable should.
Right now, I can't sit down on the floor like I used to without doing some sort of holding onto something, or bracing myself with my hands (not sturdy). I have learned how to get up without hurting myself. At work, though, I grab something that could be used as a short stool if I have to work on lower shelves. I really do need to get back into shape! Gonna see my new PCP in a couple of days (2nd visit), which brings me to my next compliment.
Lanne2389, I'm going to ask my doctor about Cymbalta. I'm taking Ativan on the rare occasion which she wants me to get off of. We weren't able to discuss it further last time since my medical file is about the size of the annual National budget book. I also get the feeling that we'll discuss diet and exercise. I couldn't be less motivated than I am right now. I want to blame it on the Femara. It seems that now matter how little I eat or how much I eat (as compared to before) I feel hungry 2 to 3 hours later, if not sooner. This can't possibly be if I consume a sizeable meal
In any case, thank you again rockymountaingirl. I will have them watch me take some stairs, etc. I really think I'm compensating to avoid discomfort, like you say. As for stairs, I do that too sometimes. My dog wants me to make up my mind where I'm going to be.
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Went to the neurologist today. My feet are very uncomfortable. Most any sensation is perceived as pain. I already had neuropathy before the Taxol, and have been on 2100 mg a day of gabapentin, and 100 mg of venlafaxine, for ages. Both are first-line meds for nerve pain. I refuse to take a tricyclic because of constipation. So, he wrote up a prescription for a topical cream with amitriptyline, ketamine, and lidocaine, to be prepared at a compounding pharmacy. What a hassle, but finally his nurse got the details ironed out. I have great hopes. He did tell me to cut down on treadmill for workouts, will have to discuss that with the trainer at the gym. I will be going to the pool this summer, it is a fairly short walk away.
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No one describes their CIPN pain like mine. Sure, I have numb fingertips and my feet burn sometimes, BUT it's the deep dull intense ache in my arms and legs that really pulls me down. I also get quick pain surges into my wrists, hands, ankles and feet but that comes and goes in a flash. I take 1200 mg gabapentin at night and because it makes me gabastupid, I also take duloxitine during the day. I decided to try life without the daytime med about 2 weeks ago and am regretting telling the pharmacy not to fill it this month. The aching pain is back with a vengeance. It must have been helping with hot flashes too because those have intensified. Anyway, I'll be back on it tomorrow and have learned a lesson about if it ain't broke don't fix it BTW, I am 5 years NED.
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My CIPN is slightly helped by a bunch of supplements that my MO has suggested. When I go off them, I am much more uncomfortable. L-glutamine, Alpha Lipoic acid, B-complex, (+ my usual Vitamin D and Ca), and my MO had specific guidelines for how much of each of those. Also, he and the triage chemo nurse both said that it takes a bunch of months of these supplements to start helping, which has been my experience, actually.
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Blownaway
I'm also on duloxitine/Cymbalta. I have found that curcumin/Tumeric helps with nerve pain and glucosamine helps A LOT with bone and joint pain. Give those a try? I was able to go off gab with this mix but my nerve pain doesn’t sound as tough as yours
Oh and for my duloxitine, I ask for 20mg capsules and split btwn am and pm. Not sure if it does anything but it makes sense to me.
Lanne
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This is one of those "Has anyone else ..." posts. I don't recall the exact timing relative to chemo (AC+T) , but I watched as the nails on my right foot changed from a rosy pink to a pale shade appropriate for an extra on "The Walking Dead." (In contrast, the nail on the big toe on my left foot is a lovely dark grey.) There was a definitive line that made it clear the change was from chemo. I'm now three years out from my diagnosis so this appears to be permanent. Anyone else?
I finally got motivated to take advantage of the Livestrong free 12 week exercise program at the YMCA near me. When I walk on the treadmill, I find that I must keep both hands on the hand rails. If I let go, my gait changes awkwardly with my steps seeming to move left and right almost as much as forward so I feel like I will fall. I've also been doing chair yoga with this program. After several weeks, I still can't stand on 1 foot for even three seconds. Prior to cancer treatment, I did physical therapy for a herniated disc and with just a finger tip lightly touching a wall to ground me, I could stand for 30 to 60 seconds. Shortly after completing all my cancer treatment, I had done physical therapy and was disappointed to fail all three balance tests, both before and at the conclusion of therapy. Have any of you enjoyed substantial improvement in your balance, even a fairly long ways out from your treatment ? I guess I'm looking for a glimmer of hope that with continued work, I'll be able to do something as simple as walking on a treadmill without a death grip on the rails.
Off-Kilter Lyn
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VLH, I too lost a lot of ground on balance when I went through chemo. Prior to chemo my balance was at least OK, and I was actively working on it to improve it. (I understand that balance gets harder as you get older, and that was certainly true in my case.) After chemo I had to have a cane just to put one foot in front of the other without falling over, and I was unable to stand on one foot for even a nanosecond. Very discouraging. I am now 10 months PFC, and my balance is still not a thing of beauty, but I can definitely see some improvement. At least I can walk pretty normally and I can stand on one foot for a few seconds. I think balance is going to be one of the hardest things to re-establish after chemo. I am again actively working on it, both at the gym and at home, and I do think that it's helping. Do you have access to a personal trainer or therapist who could help you address your balance problems specifically? If not, one of the things that I have found useful is a book called "Better Balance for Life," by Carol Clements. The exercises are simple ones that you can do at home. Some of them are still well beyond my abilities, but the ones that I can do have been helpful. As for the treadmill, I wonder if the motion of the treadmill is making it harder for you to maintain balance? I know that if I try to move faster, it gets harder for me to maintain balance, but that might just be me. In any event, I think you can improve with continued work, and I wish you the best as you go forward!
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VLH - I too used a cane while I was in active treatment after crumpling at the elevator one day. 5+ years down the road from chemo, I have permanent CIPN (chemo induced peripheral neuropathy). I've been to neurologists, physical therapists, occupational therapists - you name it. Yes, it's a little better than it was. For example, after treatment I could not even do up the zipper on my jeans due to 'dead' fingers. Fortunately I do not have debilitating pain - mostly just dead feet, like blocks of ice. The balance problem is significant. I can walk with no problem as long as I watch where my feet are going (because of course I can't feel cracks in the pavement, etc). I can not stand on one foot even after continual 'conditioning'. Yes, I too have to hold the side rails on the treadmill. I go to a Silver Sneakers exercise class twice a week, aqua aerobics twice a week and a chair yoga class once a week. Again, I feel so grateful that I don't have the pain that many do.
As for nails - both of my big toe nails detached from the nail bed. I did not totally lose them, but because they were no longer completely attached it allowed a fungus to get underneath. Eventually a podiatrist had to cut them half way back to the cuticle where they were no longer attached to the bed. Apparently I was continually re-injuring them by wearing shoes w/o a big enough toe box or enough support. It takes 12-18 months for a toe nail to grow out.
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Anyone tried laser treatments for peripheral neuropathy? I just started a program yesterday involving laser treatment, meeting with chiropractor for adjustments and work on balance issues. Also have an infrared machine I use at home and a type of electrolyte foot bath with a machine that looks like a TENS unit. Hope to get some relief from painful neuropathy in feet. My hands only have mild neuropathy
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Stilts - we'll be eagerly awaiting the results of your new treatment.
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I have been using a Whole foods( no animal stuff) low fat diet along with acupuncture and myofascial realease weekly for the past 8 months. My implants slid down and that has helped with my arm pain. I had chording in my arms that was pretty extensive and could have been affecting my neuropathy in my hands.
Over the past 6 months this combination has helped quite a bit. I no longer wake up at night with pain in my feet . The still go dead from time to time and hands still get tingley quite often but some of my strength has returned and it has helped quite a bit.
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Great news on the improvement, Exercise_Guru!
On a related note, I took advantage of a free 12-week Livestrong program at a YMCA in a nearby suburb. Although I didn't notice a huge improvement in PN numbness and my balance still stinks, the chair yoga helped with my encapsulated shoulder and core strength despite being a very gentle form of exercise. I also used their recumbent bicycle and treadmill, starting very slowly I mean 5 minutes the first day), and felt my strength and stamina improve each week. I developed something of an "independent study" because the designated Livestrong group was doing a lot of exercises beyond my capabilities so be prepared to explore Active Older Adult classes if needed, even if you're not of mature vintage. They won't "card" you at the door. 😁
Lyn
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Also just started using a compounded topical Gabapentin 10%...I have talked with someone who has a topical Rx with hydrocortisone added so I also apply OTC hydrocortisone cream to feet/hands. Along with the laser treatment, infrared machine I use at home and foot soaks in electrolyte solution something is working !!!...feet feel significantly better !!!
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My topical is amitriptyline 2%, ketamine 5%, lidocaine 5%. I am already taking gabapentin and venlafaxine orally. I am going to see the neuro today. We won't know until May if it is permanent. Gardening is a slow-motion dance!!
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I was told that Taxol would be milder, more gentle to my system than AC. Things were great at first. After the 1st dose, on chemo day, I felt great - I had energy and no pain at all. The next day started off the same way, but by late afternoon, a couple hours after the Neulasta infused, the bottom fell out. In short order I had severe bone pain deep in my knees and hips. It got worse overnight. This was on a Saturday. The next morning I spoke with the on-call oncologist. He prescribed Tramadol. It took care of the bone pain, but then horrible side effects from the Tramadol hit- severe muscle tremors in my legs, knees and ankles locked up, and extreme neuropathy in my feet, especially in my heels. By Tuesday I could barely stand up or walk. They had me take a steroid tablet 2x/day for one day and then a half tablet the next day. I could walk again, but the neuropathy has remained ever since and it is horrible. I have chemo every other week. Friday I'm supposed to get my 2nd dose of Taxol. I've done a lot of reading about Taxol induced neuropathy lately. I'm appalled by the number of articles seeming to offer treatment strategies to lessen or eliminate the neuropathy side effects, but actually conclude by admitting that the strategies just discussed usually are NOT effective, they just don't work.
On my very first visit to the surgical oncologist and later to the medical oncologist , I said that I was not willing to "burn down the house to kill a spider".
I still stand by that statement, but now I need to add a bit more to it. I'm also not willing to pop a bunch of pills to cover up the red flag signs that the house is being burning down.
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I had a break because I was immune-compromised between my last and next-to last Taxol. That is when I first noticed nerve damage. My onco said that people usually do not start noticing chemo-induced nerve damage until after the chemo is done with. @Thisissonotfun I am wondering if the Neulasta had anything with your problem. Don't give up yet. Even permanent nerve damage is a lesser evil than early and painful death.
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I had a break because I was immune-compromised between my last and next-to last Taxol. That is when I first noticed nerve damage. My onco said that people usually do not start noticing chemo-induced nerve damage until after the chemo is done with. To Thisissonotfun: I am wondering if the Neulasta had anything with your problem. Don't give up yet. Even permanent nerve damage is a lesser evil than early and painful death.
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Thisissonotfun I definitely feel that we burned my house down to kill my spider. Unfortunately, it's a lethal spider. !!!!! We have to live with a lot of collateral damage, I totally agree.......if you feel comfortable sharing your diagnosis and treatment, etc. with your settings as "public," we'll be able to see where you are in this horrible, shared club....
I did get neuropathy in my feet during chemo. Not terrible, but a bunch of numbness, and it really didn't affect mobility, but it was bothersome and kind of One More Thing.
About 2 months after chemo ended, I suddenly developed a ton of numbness and the feeling of being "asleep" in my fingers and hands. A Brand New Thing. They were easily chilly, I couldn't feel the ends of my fingers, and it made it challenging to hold small items (like a needle and thread), and play the piano, which is my hobby. They tingled, and felt asleep, and occasionally, I'd feel lots of nerve signals, which made me feel that I still had nerves that could send signals, yay, so I just hung in there with some hope that it would resolve. VERY GRADUALLY, it started improving after about 8 months. Exactly as my MO had predicted for me, by the way. He told me that occasionally it doesn't, but that very often this does resolve by 1-2 years after chemo ends. And, he explained that my onset of this issue AFTER chemo ended was also not unusual. It happens.
My neuropathy is gone now. 10 months after chemo ended, my neuropathy has resolved!!! So, I'm not in the 'permanent neuropathy' camp any more, thank heavens. Over these past 10 months, I've tried to drink A LOT of water, and eat healthily, and I've also been adding in supplements that my MO recommended: L-glutamine, Alpha Lipoic Acid, and also B-Complex. Maybe they helped, and maybe they just made my budget stretch, I have no idea. Maybe Tincture of Time was my friend all along....
I share this voyage because maybe, for others, the idea that this can eventually resolve will give some hope.
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HikingLady - you are so lucky that the neuropathy is gone. I'm at 5 years post chemo and the neurologist agrees there's unlikely to be any more improvement. That said, I still take B-6 and B-12 (which were recommended before I started chemo), but ThisIsNot - talk to your doc first. Too much of these can aggravate or cause neuropathy.
I feel lucky that I don't have pain - just dead feet. And lucky that my fingers are OK 95% of the time.
ThisIsNot - I'm guessing the bone pain is from the Neulasta. Take a Claritin the day before chemo and one for 5 or 7 days afterwards. Not the "D", just the original. No - Zyrtec or others won't work. Nobody knows why it works, but it does for most people. Also I was given a steroid to take 2x a day from the day before chemo through 2 days after. It means you feel pretty good for those days before you crash.
Taxol or taxotere SEs aren't fun, but at least it doesn't damage your heart like Adriamycin can. If you add your stats and make them public, we can better understand your thoughts.
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I, too, would wonder if it's the Neulasta to blame rather than the Taxol. My oncologist only prescribed Neulasta during the AC portion of my treatment and I was still neutropenic after three of my four infusions despite normal bloodwork before chemo so it didn't seem to provide a huge benefit for me.
I don't know that you could find much information on patients who had AC, but not Taxol, in terms of evaluating the neuropathy risks vs. improved survival odds. It's a difficult decision.
Lyn
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My chemo treatment was 12 weekly rounds of Taxol followed by 4 bi weekly rounds of A/C. I finished in June 2017. I began to feel neuropathy in my feet on round 5 of Taxol. I believe I remember my MO saying that Taxol but not A/C causes the neuropathy. My feet weren’t entirely dead - but felt like they had been asleep and we’re just starting to wake up - the pins and needles feeling, like there was always electricity swirling around. My MO said if it got really bad he’d recommend ending the Taxol treatments.
I tried several rounds of acupuncture and that helped. It got a little better but then after my BMX, it got a lot worse. I could only walk abt 2 hrs before my feet felt and ached like stumps. Supportive shoes helped. As I’ve felt better and tried to keep active, the neuropathy has very very very slowly improved to the point (26 mos after chemo) that just the very bottom of my feet and toes feel tingly - I don’t seem to get the stumpy feeling after walking a long time - and if I’m wearing supportive but cushy shoes half the time I don’t even think about it when I’m out and about. I can grudgingly live with where it is now. I can’t walk outside without shoes, and our driveway practically cripples me - it is sensation overload. Sometimes at night they feel like they’re on fire and I have to slather them with lotion. (Oh - and I’m taking Cymbalta - partly as an alternative to gabapentin - which helps with neuropathic pain.)
All that said, my unscientific feeling is that acupuncture, massage and just walking can help the nerves regroup and regenerate. High hopes for everyone
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My neurologist said exercise is good, but weight-bearing exercise is not good. However, I have several sources of neuropathy, so that might not hold for others. Most of my numbness is in my heels, the main source of contact with the ground. If I am on my feet too much, they hurt. I go to the gym, and use their recumbent bicycle, for 30 to 60 minutes, 100 calories minimum.
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Hi all
I want to agree with Lanne that acupuncture does help with CIPN. It's not a quick fix, when I started I went 3x a week for 2 weeks, and after that every 2 weeks. I now go 1x monthly. I realize that breaks the budget for some, I did find an acupuncturist in a small town who charges (only) $45 a session. He does the Eastern method on me, working with the meridians of energy in the body. He puts the needles in different places to stimulate different areas in the body. I can tell if he does not stimulate the neuropathy points enough, there will be a difference in the amount of tingling and buzzing in my feet and legs.
For the evenings if and when my feet and limbs are especially uncomfortable, I have some lidocaine/gabapentin+ other ingredients, a cream that comes from a compounding pharmacy. There are not too many of these nights anymore. I noticed my feet feeling odd after my first infusion of ACT, they felt hot and swollen and puffy, like walking on little pillows. My MO did cut my dose after the first session, since I landed in the hospital with severe neutropenia. And he split my Taxotere dose away from Adriamycin/Cytoxan, which he probably should have done in the first place, IMHO. I do not take any pills for the CIPN, since I do not have pain, per se. I would call what I have different degrees of burning, tingling discomfort, and legs that tire easier than they should.
I do now have bone-on-bone arthritis pain in rt. big toe, and very painful knees. This is really hampering my walking/exercising. I tore my rotator cuff during chemo, and finally had to have shoulder surgery last March. This long recovery has added to my feelings of frustration, and as someone above said, all of these things have come to me after chemo. I have wondered if the chemo finds every weak place in your body and gives it an extra kick?
Does anyone have CIPN in feet and also had a steroid shot in it? Podiatrist is recommending that for my toe. Unsure. Best wishes to all!
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maryna - I don't have steroid shots for my CIPN but I did have a series of 4 over a year's time for trigger thumb. This was just before i was to start chemo and didn't even want to think about surgery for a thumb. The problem totally resolved & has not come back. Maybe it could help your toe.
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Thanks, Minus. I have had steroid shots in knee and it's okay, but have not had one in foot. My feet are pretty sensitive at times because of PN. Glad shot worked in your thumb, that's a relief for you. Seriously thinking of getting one in toe so I can walk better, right now I walk on the outside of my foot a lot. Even in good shoes. Ugh
Mary
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Are acupuncture effects lasting? Or do they wear off? I’m going to try it soon for any number of things.
Has anyone here tried low level laser therapy for peripheral neuropathy? I’ve only had one treatment and it has helped already.
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marijen I think acupuncture does wear off. I do it ongoing every few months for bursitis in my hips. I have not tried it on my feet. I will look into the low level laser therapy and see how that works.
MCBaker I use a bicycle as well most days. Whatever exercise you can get is good for your heart as you know. Best of luck.
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marijen - how far are you out from chemo? I'm wondering if time makes a difference for ;laser treatment. I've had CIPN for 5 years now and there has been not change for several years.
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I am over three years out from radiation and two from letrozole. No chemo. Pain doc says the neuropathy that started a few months ago or at least got bad enough for me to get help for was from BC treatment. It caught me by surprise! You know I thought I was on my way out of the tunnel.
I have done a lot of reading on the Lllt and I think it is worth it to give it a try no matter how long you have been in pain,
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So where do you get low level laser therapy?
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