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Re: Neuropathy improvement: individual experience

Posted: Fri May 03, 2019 12:18 pm
by kellywin
I'm coming up on 6 years out from my last Oxi infusion. I'd say it took maybe 9 months to even out and get to the point I'm out now. I only did 5 infusions in the vein that included Oxi and I've definitely got it in my feet. Most everything in my fingers/hands went away fairly quickly and my feet recovered some (I stopped falling all the time). I've been on gabapentin (Neurontin) for a long time, without it, it would be worse. It's been a life saver and after almost 6 years, I just upped my dose. My feet do hurt and feel "fuzzy" all the time, but I do most everything I did before. The only thing that really pisses me off is that I can't wear my beautiful really high platform heels like I used to, too much pain. I do wear heels everyday now, just not the really tall ones (although I may change that as I slipped off one last week and fractured by fricking foot). My balance on both feet is pretty good, on one, not as much. For everyday life, it doesn't really get in the way, it's mostly annoying and frustrating, but you learn to live with it.

I'd say if you're at the 1 year mark whatever is left is probably going to stay. I highly recommend gabapentin, even if it just gets you through this phase. Plus, if you're a woman and you are now post menopause, the one positive side effect of gabapentin is that it helps hot flashes & night sweats - like amazingly!

Post chemo is a strange spot to be in I think. I think everyone expects you to just be ok now, you're not in treatment so you're great now, right? At least for me, I wanted to punch people in the face :twisted: . I looked great, had lost weight, so I must be fine. When inside I had so many feelings that I didn't know what to do with I was struggling with neuropothy, but no one gets it. Sorry for the side commentary - I just got on here again yesterday, been awhile, and posting this just reminded me of being in this spot that so many of you are in now.

Best wishes to everyone.

Kelly

Re: Neuropathy improvement: individual experience

Posted: Sat May 04, 2019 3:24 am
by Surroundedbylove
I’m 10 years out from treatment and I have permanent neuropathy. It definitely improved over the 18 mo the after oxaliplatin was stopped. My medical team explained that it generally takes 18 months or so to regrow nerves or nerve endings - if they are going to regrow. After that, I worked with my doctors to manage the neuropathy the best we can.

Re: Neuropathy improvement: individual experience

Posted: Mon May 06, 2019 9:24 am
by crikklekay
My husband's last treatment was August last year, and our doctor recommended adding B Complex to his daily meds regimen at home to help with the neuropathy. She warned us that it could take years to see improvement but not to lose hope. I know it seems trivial, but recently his feet have become ticklish again! Before he couldn't really feel much sensation except for the electric jolt or tingling so I feel like it's an improvement.

Re: Neuropathy improvement: individual experience

Posted: Mon May 06, 2019 9:32 am
by betsydoglover
It's not always that bad. I had 6 infusions (the every 3 weeks amount) in my arm. I stopped the week after Thanksgiving and my finger tips, as well as the cold sensitivity, cleared up almost immediately. The tingling in my feet (which was never terrible) ended within a few weeks. However, that winter my feet were freezing - bought my first ever pair of big, wooly LL Bean slippers.

Hope you have the same good fortune.

Re: Neuropathy improvement: individual experience

Posted: Mon May 06, 2019 7:51 pm
by Kbelo
I had my last FOLFIRINOX infusion Jan 2nd and definitely noticed and increase in the severity of neuropathy for the following few weeks, including the electric pulses down my legs when I moved my head forward (called l'hermittes sign, I think?). I've noticed the pulses stopped about a month ago (3 months post treatment) and I have very minor tingling remaining in my feet and finger tips. Overall I'm pleased with the improvements. At its worst I was rolling my ankle and tripping due to lack of proper sensation in my feet - now I'm able to do aerobics and dancing without issues.

Re: Neuropathy improvement: individual experience

Posted: Tue May 14, 2019 6:55 pm
by Surroundedbylove
I’m more than 10 years now from my oxaliplatin treatment. I distinguished between the cold sensitivity and the neuropathy - different types of pain really. For neuropathy, I was pretty classic according to my neurologist: 18 months after radiation ended was the peak of my improvement. It apparently takes about 18 months (give or take) for nerve endings to regrow - if they are going to regrow. I did do the electrically enhanced acupuncture to help “jump start” that process. I think that was at about the 6 - 12 month point and wished I’d tried it earlier.

Re: Neuropathy improvement: individual experience

Posted: Sat Jun 08, 2019 9:34 pm
by mobrouser
Hi Janine,
I have posted about my neuropathy issues before but to summarize my feet are the worst. In December 2018 I stopped driving my car because I couldn't feel the clutch pedal while driving. It was devastating. the pulsing sensations in my legs and the numbness in my feet have recently been lest severe and for the first time months I have driven my car to work this week.

I am able to put my earrings in without difficulty too. I haven't tried buttons because I leave all my shirts buttoned and just pull them over my head.

I am now 10 months since finishing chemo. The tingling in my finger tips is still there, the wet sand feeling or crumpled socks feeling in my feet is still there but I think it will always be there. I think it is now up to me to make the adjustments

All in all I'm happy to be here.
Cheers, mob
:D

Re: Neuropathy improvement: individual experience

Posted: Sun Jun 09, 2019 5:42 am
by Pyro
mobrouser wrote:Hi Janine,
I have posted about my neuropathy issues before but to summarize my feet are the worst. In December 2018 I stopped driving my car because I couldn't feel the clutch pedal while driving. It was devastating. the pulsing sensations in my legs and the numbness in my feet have recently been lest severe and for the first time months I have driven my car to work this week.

I am able to put my earrings in without difficulty too. I haven't tried buttons because I leave all my shirts buttoned and just pull them over my head.

I am now 10 months since finishing chemo. The tingling in my finger tips is still there, the wet sand feeling or crumpled socks feeling in my feet is still there but I think it will always be there. I think it is now up to me to make the adjustments

All in all I'm happy to be here.
Cheers, mob
:D


That sucks! My nuerothpathy took just over a year to get rid of, after 12 rounds of OX. I tried to claim it at the VA (my diagnosis is tied to military service) and got ignored, maybe I didn’t have it as bad as others.

Re: Neuropathy improvement: individual experience

Posted: Sun Jun 09, 2019 8:19 am
by Jannine
I'm so glad you're driving again, Mob! That is great news. I hope you continue to have many more months of improvement.

My last oxaliplatin infusion was about 6 months ago now. My hands have improved significantly; the fingertips are still tingly when I touch things, but I think I have most of my feeling back in my hands. My feet still have that electric-vibration sensation, and the tingly electric feeling goes up to my knees and is pretty much constant. It is annoying rather than painful for me, fortunately, and I do have some ability to feel touch even in my toes, at least. I'm just glad it doesn't keep me awake at night.

I have continued to have swelling in my toes and the tops of my feet by the end of the day each day, but now that I'm back on antibiotics for my c diff infection I've started having swelling up to my ankles again. So I'm back to wearing compression socks for a bit, sigh. The swelling doesn't seem to affect my neuropathy, fortunately; it's just frustrating.

Re: Neuropathy improvement: individual experience

Posted: Fri Aug 02, 2019 7:56 am
by Jannine
Update on my neuropathy: it's almost entirely gone from my fingers, after improving noticeably over the past few weeks.

My feet are still quite tingly and weird, but are significantly less numb than they used to be. The soles of my feet still feel like I'm walking on a bed of electricity, but I also can feel some sensation in addition to the jangly tingling. I think my upper calves sense normally at this point, and my lower calves and ankles are only partially numb. I can also partly feel it when I touch my feet and toes, now.

I'm about 8 months out from my last Oxaliplatin dose.

Re: Neuropathy improvement: individual experience

Posted: Fri Aug 02, 2019 8:15 am
by NHMike
Jannine wrote:Update on my neuropathy: it's almost entirely gone from my fingers, after improving noticeably over the past few weeks.

My feet are still quite tingly and weird, but are significantly less numb than they used to be. The soles of my feet still feel like I'm walking on a bed of electricity, but I also can feel some sensation in addition to the jangly tingling. I think my upper calves sense normally at this point, and my lower calves and ankles are only partially numb. I can also partly feel it when I touch my feet and toes, now.

I'm about 8 months out from my last Oxaliplatin dose.


Glad to hear about the improvement.