Vent about Permanent Neuropathy

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.

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.

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

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!

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

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.

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 !!!

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.

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.

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.

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

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!

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

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.

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,