Vent about Permanent 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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I did a search of my town and found a chiropractor who does it.
There is also low dose naltrexone that helps for pain and has many other benefits.
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Please stop using a heating pad on your feet. Since you have neuropathy you will not recognize if it gets too hot and may suffer burns or impair circulation. Also use of prolonged heat or cold beyond 20 minutes causes "rebound" which intensifies pain, not relieve it. Use socks or just warm up that section of the bed prior to you going to bed. I am so sorry you are having this experience and hope you can find pain relief.
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Ladies I am posting an update. I have now concluded that the neuropathy in my feet and hands is improved with vitamin complex B12 and metformin to keep my insulin under tighter control. Also. I am continuing acupuncture and all of the other nutrition and supplement techniques
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Exercise Guru - thanks for posting. How much Vit B12 do you take? I've been on 1000 mcg since before I started chemo at the recommendation of my MO. Good to know that accupuncture is helping.
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Exercise Guru how many acupuncture treatments have you had? I am trying it, four so far but no improvement yet. Does anyone have nausea with their neuropathy?
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Neuropathy is weird. I had extreme pain and dead feet along with numbness in my hands. This went on for 2 years post Carbo platinum. Then I met a dietician whole told me About B complex and B12 so I started taking the methylated shots weekly. (For supplement I like the twice daily Thorpe multivitamin but you only need one a day). This helped significantly. My dietician thinks I have the MTHFR receptor defect that causes deficiency in folate and B12. I haven't tested for it but maybe I had prenacious anemia because I felt loads better after the vitamin B shots.
Then with time some of the neuropathy died down. At year 3 my insurance changed and would cover acupuncture at the cancer center. I started acuncture and I I have done around 36 weeks of treatment in my hands and feet. I had umprovment after 10 to 12 weeks. They have told me that people who get in during treatment or right after have the best results. Still it has really helped especially with the feet.
Now at year 4 I started metformin because my fasting blood sugars never came down after chemo they stayed around 100. I had a 6.0 A1C. The numbers are not that high but evidently it matters. I was having a bit of blurry eyes and thought I might need to get glasses. That is also improving on metformin. So I am left to conclude that I had the perfect storm for neuropathy.
Now I have a slight numbness in my feet and dead foot at the end of the day. I go to acupuncture for boosts once a month.
The hands have improved immensely I also changed my diet and eat whole foods plant based with emphasis on lots of greens and broccoli sprouts. Can't say what that has done for the neuropathy but eliminated the awful menopause symptoms I used to get.
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Thanks for all that info Exercise Guru. I have hypothyroidism so it's possible I have pernicious anemia. I didn't know you can get the shots without being tested. High glucose of course causes inflammation so lowering it is also good. My pain doc told me about glial cells. Apparently when they are over stimulated they cause nerve inflammation. But there is no test yet. I found a lot of information on the glial cells and neuropathy at https://www.practicalpainmanagement.com/pain/other/glial-cell-activation-neuroinflammation-how-they-cause-centralized-pain
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You can get the shots but don't. Make your doctor test you first because pernicious anemia is nothing to mess around with and if positive you will likely need shots for a long time if not for life.
Also I had a specialist tell. Me that 30 to 40.percent of muscle aches are often related to low vitamin D.
Not neuropathy but OMG my life and sleep improved making sure my B levels and D levels were good.
But sadly the day after I posted this I had this article come a cross my feed about vitam B6 and vitamin B12 increasing hip fractures
Vitamins B-6 and B-12 linked with increased risk of hip fracture
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