NeuroTalk Support Groups - Neuropathy after Chemo

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Neuropathy after Chemo (https://www.neurotalk.org/peripheral-neuropathy/197176-neuropathy-chemo.html)

Neuropathy after Chemo

I want to talk with someone who got neuropathy after chemo treatment (mine was for ovarian cancer). Now I am looking at having knee replacement surgery and I'm worried that the knee surgery might make my neuropathy worse. Does anyone have experience with this situation?

Hello skippyfeet :)

Nice to meet u.

I finished 6 rounds of carbo/taxol in March of this year for Serous Uterine cancer (it's rare). I had a few neuropathy issues during chemo but nothing serious. About a month after I finished chemo it was like a bomb dropped. Ono dr told me it would go away...after many diff dr visits I had a skin punch biopsy done and I have 0 A and C fibers in my feet. Small Fiber Neuropathy. It's not going away for me.

They also attribute it to my pre-diabetes...my A1C got up to 8.7 but I don't think that was really high. I just think the chemo excelerated it.

I can't give u any info on the knee surgery but I am sure there will be others on here that can.

Please keep us posted :)

Debi from Georgia

Hello St George. Nice to meet you too. Thanks for your response. I've had my neuropathy symptoms ever since about the 4th treatment with Chemo. I had six all together for ovarian cancer. I know it was taxol and I think the carbo was part of it too. My symptoms are cold feet, numbness and tingling. No pain thank God. What are the symptoms you have? I've sort of got used to it but I sure don't want it to get any worse and thus my quest for some others in my situation who 've had total knee replacement.This was the best luck I've had. I've had about three sort of positive responses from people on this site. I tried to answer them back to ask them more questions but got no response. So I put out another request and this time got your answer but no others. I'm not too good at using this site. But good luck to you with your neuropathy. Happy Thanksgiving. Skipppyfeet.

For me, I already had PN from diabetes. Didn't bother me a lot. Then I had a severe allergic reaction to Taxotere. I don't ever want to experience that again. It left my feet numb on the top, the bottom, sole, just feels weird. Not pain, burning, just strange.

Chemo is nasty stuff, I hope I never need it again. My motto during radiation and now is. DIE CANCER DIE

Good morning skippyfeet :)

I am so glad u have no pain with yours. I have multiple symptoms that happen on and off throughout the day. My feet are always 'shimmering' :) a movement under the skin up and down the soles of my feet. Tingling, electrical shocks and sometime thru the week it feels like someone is trying to stick a round rod up the middle of both feet. My problem is that when I feet touch anything it causes my nerves to go nuts.....I stay off my feet as much as possible but that is basically impossible. I'm on gabapentin and at this time am being titrated up to 2700 mg a day. I also broke down and put myself on a pain med schedule at the beginning of Oct.....1/2 a vicodin 4 times a day and it helps. My PCP had been trying to get me to do that but I was hesitant.

I'm sorry I can't help with the knee surgery question. Please let me now what u find out :)

Debi from Georgia

Hi Skippy feet and St George

This neuropathy really is a pain! I feel like I am walking barefoot on pebbles most of the time. Skippy, I am not sure who suggested a knee replacement or why it was recommended but one thing that I did feel with neuropathy was pain up the sides of my legs and tightness at the front then the back of the knee. I see a physio for exercises and massage, a podiatrist (who recommended richie braces), my GP, my oncologist and a great neurologist who put me into Intragam. Intragam is a clear blood by product so it is not toxic. It protects your nerve endings as they regrow. I am now 10 months down the road from chemo (ovarian cancer) and 9 months down the road being treated with Intragam. I have definitely improved - balance, walking strength and reduced swelling in feet. I haven't worked since Feb 2012 and there are days when I feel like I have fallen into a deep pit. My hope is to be walking normally by July 2014. I will keep checking in until I reach my goal! Let me know how you are going. Best wishes aggie

Hello there aggie and others :)

So glad you brought this thread back to life.....the 2700 mg of gaba a day was making me crazy in the head and doing nothing at all for the symptoms in my feet. My neuro has lowered my gaba back to 1800 mg a day and started me on generic Cymbalta at 60 mg each night. It has been no help at all. I go back to him next Tues and expect him to increase the Cymbalta. I now think the SFN is spreading up my legs and my upper right arm....it's a deep aching pain. My fingers are now bothering me again and you are so right......this pain is just crazy ! I have absolutely no idea when I wake up every morning what type of day it will be.....a good one or bad one. Forget planning anything.....lol

I don't know if the meds are not helping because my feet are devoid of A and C fibers......0, zero, nothing there to regrow per my foot dr and neuro. I'm on vicodin for the pain and when it gets unbearable I add a Xanax to it and that seems to help. I do have an appointment at Emory Neuropathy Dept on March 25th and I am really hoping they can help me get some quality of life back. Any time my feet are on the floor it makes everything worse. I can now add 'stinging' to my list of symptoms. Man that hurts ! I just want to be able to clean my house, grocery shop and cook again. Never thought I'd miss cooking but I really do....my big family is missing it too :)

I don't know what I'd do without all of you on this site.....such nice people with so much info.

Debi from Georgia

Quote:

Originally Posted by St George 2013 (Post 1045389)

Hey St George I don't like this new state either and it's really hard to accept it as the new (hopefully temporary) normal. I tried so hard in the beginning to go to work, be happy around people, brush aside my problems until bang! my body won over. In my worst phase I could not turn a key in the door, light the stove, do my buttons, hold my knife or a pen properly, type and I couldn't stand up - Showering and toilet were awful. This list has gradually changed to a few cans so I totally share your silent question Will this pass? But it slowly is. I can do my buttons, am writing better, typing ok, using my knife better and can stand up without a stick and without wobbles. When I saw my neurologist initially she said my feet had left the building - I guess that's why she put me on Intragam without hesitation. I will see her in February and ask if its ok to name her here. Perhaps she could share her results with neurologists in the States! I know I did eat peanuts because they have inositol in them and this is supposed to help nerve impulses. My feet and hands were numb for at least 4 months but now they are stinging. I tell myself that my nerves are waking up because they are painful and for me this makes me carry the problem a little easier. I miss the outdoors as I can't drive at the moment and not yet confident to get out on my own so I try to open every door to conversation that I can. Keep fighting the good fight - I also pray that this will pass for us both and when it does, we'll be leaping with joy!

Good morning aggie :)

Well it's morning here in GA anyway :) And a cold morning....about 24 degrees out there and will be 15 degrees in the morning. On mornings like this I'm thankful that I don't work...lol

It's been 9 1/2 months since the SFN symptoms started and I'm pretty much the same now as I was then. It is in my legs and one of my upper arms but I'm not going to ever stop trying to find something that works for me. I've come to realize it just takes time. I started on gaba and now he's added Cymbalta as I mentioned above.....he'll keep increasing it until it helps or makes me crazy.....I'm assuming if the Cymbalta doesn't work he'll take me off that and try Lyrica. I will probably be at Emory by that time. My onco told me to keep seeing my neuro until I could get in to Emory so that is what I'm doing.

I did a lot of moving around this past weekend (my mom built an addition on to our home and we're working on getting her moved in) and now I'm paying for it. The worst is the outside of my left foot....always slightly swollen and when I am on it too much it swells worse and the pain is unbearable. I've had it x-ray'd and seen a ortho who said it was tendinitis......I just think it has to do with my SFN.

My balance is ok but I walk very slowly and watch my feet most of the time. I walk like a 100 year old....actually they may do better than me ! :)

Okie Dokie......y'alls turn to reply.

Debi from Georgia

Me tortoise! You hare!

Quote:

Originally Posted by St George 2013 (Post 1045498)

LOL to your last comment. My parents are 80 years old and my Dad has Parkinsons and even they could out walk me! So embarrassing! We are averaging 30 plus temperatures at the moment and would love a cool change. I was thinking about posting a brief summary e.g timeline / time cycle about my progress and wondering if it would be helpful at all? I have also posted a poem in "Creative corner" for you! Aggie