neuropathy

Elsie13

   @angel27 I finished chemo in the summer of 2017, Carbo/Taxol. The neuropathy in my feet is gradually going away, I think.  I have lymphedema in both legs, so occasionally my feet feel sort of 'strangled' by the compression stockings. Anyway, I haven't tried any sort of supplements for neuropathy. 

kastoyles

I have some residual neuropathy in one foot - mainly the heel and two toes. I can't say that it has really changed since I finished chemo four years ago.

Flowergirl

I'm right with you @angel27 - I also have found the B6 has helped and yes, proper footwear is important too!

Bluebird

Hi @angel27.  Neuropathy in my feet as well after chemo.  It did make me change jobs as I cant stand for any length of time now.  It's like pressure pain in my feet.  And very hot/cold sensitive in both hands and feet.  I have orthotic in my shoes that I think helps..and I take B vitamins and Gabapentin..I think they help..my oncologist thinks that its permanent damage for me as it's been almost 2 years now since chemo..but I'm alive, I have quality, I have ability.  

angel27

Thanks ladies. Someone also mentioned arthritis. I am just developing it badly in my fingers. Even getting those nasty bumps on my fingers. Also in my big toe. I thought it was gout at first. 

Flowergirl

I hope you all can find some relief on what will work for you to deal with these side effects
@Bluebird @angel27 @Elsie13 @kastoyles

I'm curious, has anyone tried the diabetic nerve pain cream to deal with the tingly toes? there are a few out there.

Bluebird

@Flowergirl,  I dont know if the diabetic nerve pain cream is the same, but I inquired about a cream that a non cancer group of patients used for neuropathy type pain but they did not have much success. I did not try it.... I think that each one will have to try and find what works for them...I have heard CBD oil works as well..I wonder if anyone has used it??

Flowergirl

LivRelief was the one I was thinking of
Like everything else, I guess there are mixed results.
Yes, there are some older posts about CBD oil if you want to look back at them 

Elsie13

@Flowergirl, @Bluebird, @angel27, @kastoyles, I never used any sort of cream for neuropathy. My chemo ended in April 2017.  I noticed an interesting thing in 2018.  I would walk to the gym, and my feet were tingling. In zumba class, my feet were absolutely fine.  Then after the class, I would do some slow stretches on my own, and the feet tingling started again. In Zumba, your legs do this and your arms do that and maybe there's a hip  movement or shoulder shimmy. I'm thinking, my brain was so occupied with all the crazy choreography, there was no room in my head to feel the tingly feet???

Bluebird

@Elsie13..you just have to do zumba 24/7 and a little hip and shimmy..you'll never have any neuropathy...I'm game to give it a go

kastoyles

@Elsie13 - I don't notice the neuropathy when we are walking, but afterward it's like I've been standing on my feet all day - I notice it in my heel. For a while I was getting foot massages at our Day Wellness group at the local hospice and I feel that they helped.

PatD

I'm a little shocked by the lack of help from doctors and nurses. It started in fingers right after first chemo, worse after second, toes and balls of feet after third. If you can't do up buttons, they right reduce the Taxol dosage. I don't want permanent nerve damage?!  A heater/vibrator helps temporarily. I already take mulit-vitamin with B vitamins. The only other side-effect is a bald head, which is probably reversible.

kastoyles

I didn't realize I had neuropathy at first. It was like having sand between my toes and I felt like I was walking on the hem of my pants. I have heard that some Teal Sisters use ice packs while getting their infusion and it helps with the neuropathy. I also took a multi vitamin and also a separate B vitamin. I am five years past my last infusion and still have some neuropathy in my left heel and at times feel it in the pads of toes on left foot. I've resigned myself to having this for the rest of my life but it hasn't gotten worse so I'll take that as a good sign.

UnPickNot

@PatD. I have lived with this disease for 8 years now. I have neuropathy and it does get better after treatment ends. The nerves have a regeneration period up to 3 years post treatment according to my neurologist. He recommended Alpha Lipoic Acid which I was already on prescribed by my naturopathic doctor. 

But not everyone gets this recommendation. And not everyone ascribes to the icing of the extremities. This disease is so specific and we are each so unique that it is difficult sometimes  to gather cohesive information to make a decision. Pick a voice to trust and then filter everything else through it until you have enough information to go on. 

I have been on Taxol twice - heading into round 3 in the new year as part of a clinical trial I hope. I was 4 years NED until my first recurrence. 

And yes, the bald head is generally reversible. 😉

PatD

UnPickNot said:

... my neurologist. He recommended Alpha Lipoic Acid which I was already on prescribed by my naturopathic doctor.

...I was 4 years NED until my first recurrence.

I ran across research about Alpha Lipoic Acid being effective for diabetics but there didn't appear to be any indication it was effective for chemo patients.

What is NED?

Fearless

@PatD
NED is he acronym for "no evidence of disease".  Oncologists seem to hate using the expression cured, since the cancer does have a habit of recurrence, generally in the first five years if it is going to happen. So the use of the NED acronym is the way of saying the scans are showing no visible disease.  

As for the Alpha Lipoic Acid, I'm going to investigate that one for myself since I am badly plagued with neuropathy in my lower legs and feet.  That said, there are many treatments that are developed and primarily used for other diseases, yet have been found to be effective for some with OVC.  Since it's probably not considered as its primary use the literature probably doesn't mention it.  Not unusual .  

jobo

My oncologist takes it a step further - she thinks NED might suggest that there's no disease present, so she prefers "in remission."  Cheery soul!

BeamBlossom

I took the alpha lipoic acid as best I could during frontline chemo. The problem with is that it can counter act the action of taxol and carbo so the pharmacists and oncologists don't like patients to take it. So, I took it only during the last week prior to the next treatment, probably not enough for it to work. I did though have great success with another suggestion which is a balm of Frankensense and Myhrr, I faithfully rubbed it on my feet every night and it did take some time, but after about a year I'd say 90% of the neuropathy was gone from my feet. I'm fortunate in that I didn't have it in my hands. The only time now that I notice the neuropathy is if I walk barefoot across a hard surface like a tile floor, it feels like I am walking on a floor with sand or rice spilled all over it. So, I am always wearing flip flops in the summer and slippers in the winter.        

Camper62

At the risk of sounded stupid - can someone tell me how neuropathy feels?  I am on olaprib and finished chemo in Jan 2021.  My feet, from my ankles down ache and feel tight all of the time.  When I first get up from sitting I can hardly get my feet moving.  Is this neuropathy?  A side effect from olaparib?  Or an unrelated issue?  

Fearless

@Camper62 first of all congratulations on completing our treatment.  

The symptoms you mention can be manifestations of neuropathy. It appears in different ways and in different areas of the body.  But if it has not been diagnosed yet, then you are best discussing these symptoms with your oncology support to ensure the symptoms are not evidence of something else.  As for it being the outcome of Olaparib, once again, side effects differ with each individual. Your cancer care team will be best to determine if Olaparib is the cause and, regardless, the best approach to mitigating the discomfort.  

Hope you an get it resolved and quickly. I do have neuropathy myself and fairly similar symptoms to yours but I've had mine since my primary treatment 6 years ago.  For me cause was clearly chemo related.  

Camper62

Thanks @Fearless

kastoyles

@Camper62 - I wasn't sure what the feeling of neuropathy was either. When it first started it felt like I had sand between my toes. Then it felt like the hem of my pants was caught under my heel. Five years out from my last chemo, I still have a mild sensation in my toes and in my heel, both on the left foot. It's much better than it was but I have a feeling it will be with me for a long time.

Camper62

Thanks @kastoyles.  I will speak to my oncologist again.  Maybe it's something I just have to learn to live with -- and that's OK.

kastoyles

@Camper62 We learn to live with many things, don't we? To me, as long as I know why I can either live with it or find a way to 'resolve' it.

PatD

A month after surgery, the oncologist reduced the Taxol by 20% for the 4th chemo. Everything went well until Day 4 when I was hit with neuropathy in fingers/toes, fatigue, loss of appetite (a first), some joint pain. Abdominal pain increased - 5 weeks after surgery I still have pain and swelling but the oncologist seems happy with my progress. I grew some hair after my chemo rest of 2 months and it's hanging on - haven't shaved it yet.

I started Vitamin B Pyridoxal-5 Phosphate (PLP) 32.5 mg/day about 6 weeks but it hasn't help so far.  LivRelief extra strength for Nerve Pain also didn't help but maybe should have stuck with it longer than a few weeks.

NovaScotiagirl

I finished chemo in July of 2020, I still have neuropathy in my hands and feet.  I have fallen several times but keep going.  I find it difficult to hold a pen or pick up smaller items.  I was ad used if it doesn't go away within 2 yrs it may be permanent.   The inside is I have been cancer free.  

PatD

Do any patients who suffer neuropathy in fingers and toes during chemo treatments ever recover from it? 

Has anyone consulted a neurologist, or tried acupuncture or physiotherapy?

Fearless

@PatD @NovaScotiagirl and anyone else who's generated a discussion or comment on neuropathy, as a sufferer myself for the past five years, I am at as much a loss as all of you on what can be done and what to expect.  Like I always suggest, I have informed/consulted with my oncologist regularly to no avail.  No solutions have been offered. Asks for referral to a neurologist have either gone on deaf ears or I've been told there's nothing they can do. I've been told to raise it with my family practitioner since it's not cancer...although in my mind it's a treatment side effect.

The best I've done is to gather suggestions from our community here and try what makes any sense to me but so far no miracle solution has surfaced.  So I plod away, living with it as best I can.  I did notice for the 6 months I was on a treatment hiatus last year some feeling and less tingling in my feet and legs...minor but noticeable. But as soon as I went back to treatment any gain was lost again.

This and the PARPs (Zejula and Olaparib) seem to be hot topics the last few months so I am going to suggest to OCC they think about those as possible Speaker Series topics this year.  Would be lovely to hear from those with particular expertise in the subjects and lots of time for Q&A.  

kastoyles

@PatD My doctor referred me to a neurologist, who determined my case was not serious enough to warrant treatment. I do have some lingering in one heel and toes, but it isn't bothersome and hopefully it won't get any worse.

PatD

kastoyles said:

. ..  was not serious enough to warrant treatment. .

Did the doctor say what treatment was used if it were "serious"?

I watched a video on one of the cancer sites about "managing side effects" from cancer treatment by Crista Slatnik RN NP.. I'll see if I can find a link. She recommended physiotherapy, acupuncture and acupressure to treat neuropathy if it didn't resolve after treatment ended.