Vent about Permanent Neuropathy

Tomboy

Hi guys! I have been using Topricin cream for two years now. I swear it works, my boyfriend swears it doesn't. My mother loves it when I gave her a big jar. ALL of the topricin creams work. They didn't stock the foot cream kind when I first started using it. It doesn't cure it, of course, but it makes it feel soon much better. Much cheaper on Amazon, but I first found it at the vitamin shoppe. I would bathe in it, if I could.

MinusTwo

Thanks for the recommend Tomboy.

Jackbirdie

I have been lurking here for awhile too. I don't have pain, but am kind of pin prickly and numb. Sometimes not too steady on my feet.

I happen to have Topricin, which I use for lower back pain, it was recommended by a massage therapist a couple of years ago. Tomboy, are you saying the regular cream can work on the feet? I think I may try it.

Does anyone know what ingredients are different between the regular Topricin and the Topricin foot?

ktym

Sylvia and Debbie, sorry to see more people joining us here. I do hate Taxotere with a passion.

Debbie that saving yourself for that one walk thing and family having to care for the things you aren't safe to do is exactly where I was at 3 years.

elimar86861

I'd like to give the cream a try. No Whole Foods, so I looked it up...Topricin is at Walgreens, CVS and quite a few more places, even WalMart. I'm not in pain, but it does say "promotes healing" so I'll give it a whirl. Too bad I could not have tried it sooner.

The only thing I have been consistent about using is Vit. B complex. My improvement is soooooooooooo sloooooooooooooow now, I can hardly even tell month to month, but I do seem a bit better than I was in the Spring. I can feel blades of grass this year. the "stem" of my toes actually did get some feeling back, but the pads are still numb. I think it is difficult for any new nerve growth (or repair) to take place in the more calloused areas.

proudtospin

gee did not see it at Walgreens but thanks for the info, just spent for a jar at Whole Foods, I know my Ws would order it for me if it not in stock

elimar86861

I had not been so steady about taking Vit. B over the last few mos., but having been more regular lately. I think it still helps, even after 2 years.

My latest update is that 10-20% of my feet (frontal areas) are still numb...

...but the good news is that even in my numb spots, I noticed that I have some feeling in them. I mean everywhere really. No longer do I have any spots that are totally sensationless. Some "numb areas" have only 20% of feeling, but some have come back to 70-80% by now. They just feel like weird feet now, but at least they feel like feet.

I know from some of you before me that I can improve after the 2 year point and I have every indication that one day, with a little luck, I might have my old feet back. I am full prepared for that to take another year or even two. My improvement really has been at a snail's pace. It has gotten to the point where it is just slightly better from month to month. Week to week, I cannot notice.

Not everyone can get full feeling back, I know. However, there are some that do so why not me? (That's how I always project myself into the best case scenario. I have done that thru' 2 cancers already so too late to change me now.)

I do have more aches in my feet now (like arthritis, but different) and I like to think it is some new nerves learning how to interpret things.

Just wanted to write this out for those coming in behind me. There is some hope for reversal. Although I was not affected on 100% of each foot, they felt more like blocks of wood when I began, but I can feel blades of grass now, I can feel sidewalk, and carpet texture. A lot has come back. I will say this again because I cannot say it enough: I think anything that promotes blood flow promotes healing. Figure out how you can best make that happen and then get ready to wait. The rest is time.

elimar86861

That is great news B-Blues! I was on a plateau earlier this year, but also feel like I've gotten a bit more feeling back lately and I am 25 mos. PFC. I have now read several posts where the healing continues past the two year point, so don't lose hope ladies. Agree about the Vit. B.

MinusTwo

Thanks for the stress comment Bosum.

I'm taking 100 mg B-6 and 1000 mcg B-12. I was taking double that amount of B-6 but my neurologist cut it down since she said it could cause more side effects than solutions. This is in addition to what's in the multivitimin - 3 mg B-6 and 25 mcg B-12. What quantities are you all taking?

Also still taking Biotin since my big toe nails haven't decided whether to get better or not. I was hoping to quit that since the hair on my legs is going crazy & and I can only use an electric razor due to numbness.

I have more feeling in some of my smaller toes, so now the biggest problem is the balls of my feet and 1/2 way up my calves.

NWArtLady

This thread is SO helpful! It helps to know I am not the only one... The neuropathy has been getting worse in my feet lately and I think it is because this summer I stopped going to my acupuncturist regularly. I am scheduling myself for once-a-week appointments asap!

Acupuncture kept me functioning during chemo (especially with the bowel issues) and it enabled me to regain the feeling in my fingers (so thankful!). I completed AC+T 12/30/11. My feet were the worst and, as I said, are getting bad again. I went to an appointment earlier this week and got relief almost instantly.

I am also going to try the Topricin as the pain is just too much. Thank you to those who recommended it!

<edit> My husband, a most amazing man, is popping over to Walgreen's to get it right now! It's 9:45pm... he is so good to me.

MinusTwo

Bosum - hooray for much improved!!! I need to find a yoga class.

proudtospin

my gym has yoga, think I need to join the class, I know they have some beginner ones as it has ben way long since doing them

exercise_guru

I am sorry I am new here so I diddn't get time to read through all of the posts. I did post this in another thread in Stage iv

Has anyone been recommended L-Glutamine at 30 grams a day? This is tasteless and mixes in juice etc. I think the dose is taken 10 grams 3 times a day. I only know about this because I was on glutamine for wound healing during chemo and the dietitian had recommended "Juven" Later when I experienced Neuropathy she recomended I up my dose to 30 grams daily. She had a scientific paper I will try to track down but it helped immensely and is quite a bit cheaper than the juven.Very easy to take. My oncologist was very familiear with it so maybe worth asking L-Glutamine is just an amino acid but taken in higher doses than hormally seen in the diet.

elimar86861

exercise_guru, I was aware of the 30gm of L-Glutamine and that protocol is for during active chemo. I did try it for a few weeks, but just could not sustain it over five months. I will be interested to hear if you can successfully take it throughout your chemo and whether you experience neuropathy afterward. Please post the results of your personal experiment here. Thanks!

proudtospin

what I thought was neuropathy from the meds, now turns out to have been the early signs of spinal stenosis, pain in back and feet at just a part of it all

proudtospin

BB, that stinks big time, hope you find some sort of relief, I am bonded to my lovelyheating pad but have been doing PT recently which seems to help all the junk

proudtospin

BB--I found a good Physcial Therapy place that is helping me a lot, my balance was awful so we are working on that as well

amazing how many folks have back issues, just had an electrician in my house and he has back issues, if he were to take the heavy duty pain meds, he could loose his license if caught, and his wife is dealing with uterine cancer, guess that is why he came out to help me on this Sun morn!

GwennyMD

Hello Ladies

I have not been here in a very long time. As they say, life happens. I retired a few weeks ago and took my one and only grandchild to a college that is 2500 miles from home.

I am 2 years PFC and at its worst my feet would have the burning, tingling moving sensations that would keep me awake for hours when I am trying to go to sleep. I have been having other problems with my feet and ankles so the neuropathy was not at the top of my list of concerns. I mentioned this to my BS along with my complaint that most MOs seem to be so happy that they killed the disease or at least kept us alive that none of them appear to have any answers about the chemo side affects. My BS ( female who always listens) referred me to a rehabilitation specialist who has started working with chemo victims. He decided to try a two month trial on Cymbalta. I did not start noticing a difference until the second month but the neuropathy symptoms have improved.

My other foot problems have improved now that I no longer have to walk around 4 - 5 days a week on hard stone floors. Hmmm retirement does have some benefits.

ktym

proud to spin, sorry to hear about the stenosis,

Bosum Blues, I think stress hurts coping abilities too. I don't know what the weather is doing where you are but cold damp weather really bothers me and I had quite a set back this spring when we had a spell of it. So much of the time it seems like we put things out there for each other to see if we can find things to help each other with it is so frustrating!

Gwenny, I absolutely think the ability to stop and get off your feet, get up again, stop, get up, stop, etc. is huge, Not many of us can do it but for those of us who are not on our feet working or who are retired it is a huge difference in how we manage

Chloesmom

sometimes my foot hardly hurts all day but then I'm tiring to go to sleep and I get these electric shock type sinners that take my breath away. Other yo ones a deep pain in the metatarsals. A massage therapist said its where there is a nerve that often gets a neuroma, but this is a different irritated pain in the middle of the foot behind the 3rd toe

dtad

I just would like to say I understand all of you. I was diagnosed with an autoimmune polyneuropathy 15 years before my bc. I was 46 at the time. Neuropathy is really the worst pain one can have. It can give you all kinds of nasty sensations. From cold to hot, from burning to numbness, and just horrible pain. I do think that most docs are in the business of saving lives and not too sympathetic to the side effects of treatment. My advice is to get to a good neurologist while waiting for it to improve. Good luck.....

QuinnCat

I had a longer than normal course of chemo in 2012 - AC dd, Taxol dd, Carboplatin (6 months). Taxol caused my neuropathy - carboplatin exacerbated. I never had it as bad as most as I could hike on dirt trails and roads, though my feet burned and tingled toward the end of every 1-2 hour hike and I suffered the rest of the day with burning and I had constant numbness (initially I had some drop foot and weird stuff with my bladder and lower back, which I now think neuropathy)...walking on flat ground or down hill much harder than uphill (force). Walking thru the Costco parking lot, or standing on cement floors, the worst. I was told I would only see improvement for one year, maybe two years. That's about right until this last July, when I took 2 weeks off from walking and I experienced some miraculous improvement. I still have numb toes and the balls of my feet a bit numb, still burning and some tingling, but I would say I took a jump from 50% of the worst to about 20% in a rather sudden way after that break and this is year 3 after chemo! Other than the break, I can say since the first of the year I have been using B12 oral spray daily. Could that have made the difference? Yesterday I even walked 1.5 hours on paved FLAT streets with very little after affect. Yes, I still am aware I have neuropathy in my feet if I think about it, but my feet are not constantly reminding me of it, like they did, even earlier this year, so I think there is hope for improvement, even 3 years out.

elimar86861

QuinnCat, Happy to read that you are continuing to improve. I have just passed two years also, but I never had a dramatic improvement. It has been barely perceptible most of the time, although I have arrived at the same place you have: Still numb in the toes and balls of feet but normal enough that I can sometimes go hours or a day without dwelling on it as I used to. Hope to hear more from you, especially if you have continued improvement. Good Luck!!!

QuinnCat

Elimar- the dramatic improvement surprised me! There were times, earlier in the year, when I thought of all the things I could no longer do because of neuropathy, and the realization I was over 2 years out and had read to expect no improvement after two years, I could get quite depressed about it all. I was only taking the B12 because I was trying a vegan diet (that didn't last but I continued with the B12). I hope all can have surprises like this

Sloan15

Hi. I'm new here and need some advice. I'm thinking of quitting chemo. I "only" am supposed to do 4 rounds of TC, but I'm 5 days after treatment #3 and the pins and needles are terrible. Maybe they will get better -I heard it does that between sessions sometimes- but I don't know if I could stand for it to get worse. I didn't get the oncotestDx, but it's estimated in the intermediate range. Did anyone stop chemo? Did anyone's neuropathy get better between treatments or stay bad after only 3 treatments? It's just so frustrating and scary.

Italychick

sloan15 ask MO about reducing dose or switching from taxotere to abraxane. Supposedly abraxane doesn't have a preservative in it that causes problems, but it is more expensive and insurance companies don't like to approve it. I believe it has the same chemo agent as taxotere. I had five treatments instead of 6 because I was stopped due to neuropathy (couldn't feel water temperature in hands, second toe next to pinkie toe was dropping and I had pins and needles and burning in lower legs, also gastrointestinal issues came up). For what it's worth, four months after chemo, all the issues have resolved. The MO also had me start alpha lipoic acid and something else for neuropathy.

But reducing dose or trying abraxane instead is a definite thing to consider.

The biggest thing to ask yourself is if you stop after round 3 and the cancer comes back, how much regret will you have?

Italychick

Polysorbate 80 is supposedly the taxotere preservative that causes problems.

Sloan15

Italychick - as always, thank you for helping me. Your advice is gold. I'll talk to my MO next week. I also feel like crap which is making me want to quit, but yeah, I did this chemo to fight. I'm so glad to hear your neuropathy is better.

Italychick

Sloan15, any time. We are all here for each other! I hope you get your issues resolved.

april25

My MO prescribed L-Glutamine, medical grade powder, taken with liquid, 3X a day when I was on chemo.

He said it helped with a number of SEs, like mouth-sores, which I did not get.

I did get some chemo-induced neuropathy, but no pain, just weakness in the nerves of the legs. My nerve damage does seem to be improving since the end of chemo. I went to a neurologist to get tested during chemo and after chemo he said I basically was improving so much that I didn't need any followups unless something else developed.

The L-Glutamine was pretty horrible to take, though. Not bad tasting... no taste at all, really, but it was this super-gritty stuff! I'd rather have it in capsules! I actually didn't take it as much as I was supposed to... Maybe 2x a day, most of the time, and not while I was hospitalized for a week, etc. It was hard to tell if it was doing anything... but I really have a great MO who knows what he's doing, so I've got to think it had to be a good thing (even if I was bad at taking it).