Vent about Permanent Neuropathy

Hi NotBroken - oh I agree about the cold weather. Or the barometric changes. Or the phases of the moon (LOL). So sorry to hear your pain is back. Are you taking anything that might help?

Is there any way you could try acupuncture? I go to the integrative health center in our hospital. They only work with cancer patients so it must have some benefit documented.

They say it works the best if you start as soon as you can to when the symptoms start.

Also I would personally try b complex and b12 . Thorne bitamin makes a good methylated formulation.

The neuropathy webcast on the homepage is helpful as it explains that different drugs do different things to the nerves.

It's hard to say if it will be permenant. The gabapentin etc helps with the pain but there isn't good science regarding rebuilding the nerves.as of now conventional medicine doesn't have a lot of curative solutions in that area.

NotBroken and MinusTwo and KCMC

YES to barometric changes, for me if a cold front is approaching I can tell, or a very rainy weather system. On those days I can feel as if I've been beaten with a bat all over, very achy. Once the front arrives I will feel better.

YES, acupuncture helps with the neuropathy burning pain and tingling. I go to an acupuncture doc who practices the Asian method of working with the meridians of the body to keep in balance. When I first went, soon after chemo ended, I went 3x a week for 2 weeks then once every 2 weeks, now I still go every 3 or 4 weeks. I think of him and my massage therapist as necessary for my wellness.

KCMC I have systemic neuropathy, it has made my legs weak. Also if I have had a busy day, in the evening my whole body will feel it; my mastectomy area will feel tight and nervy, I will be tingly in legs and feet and arms, back will be painful. If I have a good night's sleep, I will usually feel better in the morning and start the cycle over. Acupuncture does help, especially it helps for me with the burning painful feet and legs. Nothing helps the leg weakness except rest.

Mary

Sorry to interject on the current posts of vitamins and accupuncture. Wanted to write a quick post that will give some hope to those 2+ years out from their CIPN.

RIGHT NOW (over 5 years PFC) I would say that my CIPN is only about 4% in my left foot, and 5% in my right foot. I have a couple toes that feel 99% normal, and almost nothing in balls of feet now. What it feels like is that the nerves regenerated in all the harmed areas, BUT it seems like where I might have had (let's say) 10 nerves, only 7-8 are there now to do the work. Although ALL areas of my foot have feeling now, some just have less feeling than before all the damage occured.

What did I start with, CIPN-wise? Here's an old excerpt from a post I wrote at about the 7 mo. point:

When the neuropathy began, I would say that my left foot was 45% numb and the right was 55% numb. After the New Year, it seemed that I might have improved to 40% numb and 50% numb, respectively. Really, it was hard to distinguish, and it seemed like I would have some days better than others. Now, I would say I might be at 35% and 45% numb, left and right. The other day, my toes could finally feel the hotness of bathwater. Just a little.

What I wrote above is about the degree of numbness, but he area of numbness is definitely reduced also. I barely feel it in my heels anymore.

My changes were more noticeable the first couple years, but I still had A LOT of healing after the 2-year mark. I was never immobilized by my CIPN. I kept my feet active, kind of bossed them around really, and I urge all of you to do the same, if possible.

I still have not given up to one day have "old normal" feet. At this rate, it may take 10 years. My cancer is gone now, so I plan to be around to find out if I am right.

Healing wishes to everyone posting here.

I'm bumping this in hopes that those affected will read my post just above and remain hopeful for their own healing.

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.

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.

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.

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.

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.

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.

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

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.

McBaker - definitely do talk to your doc before the next chemo to see if he/she wants to consider reducing the dose.

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.