neuropathy

JaneWest

I'm wondering if anyone has experienced neuropathy caused by chemo. If so, has it improved? or even disappeared over time?  Also, is there anything you do to help with the symptoms.
Mine is not so bad, but it definitely affects physical activities. It developed in my hands and feet about one month before my chemo treatments were done. 

meganG

I did have neuropathy after my first chemo cycles but it was quite mild.This was just in my feet not hands.It eventually disappeared and although I have since had more chemo it did not return.

Flowergirl

Hi everyone - yes I still have tingles in my toes - it seems to take so long and I'm told it may stay - hoping for it to be a gradual get better

UnPickNot

Hi Everyone. I have neuropathy. It was persitent and wide spread even 4 months after treatment. Numbness in hands and feet, tip of my nose, etc. It has receded and I now only experience it in my hands and feet. Mostly my feet - I now have CTS which complicates my hand diagnosis.
My Neurologist said that the most recent research showed that neuropathy from the taxol drugs shows a healing period of up to 2 years post treatment. That has certainly been true for me. I am 3 years+ past treatment and my neuropathy is significantly reduced.
I will never wear high heels indiscriminently again (sad face) and i use walking poles for long walks, but I am very pleased with my overall healing.
There was no therapy or medication in my recovery. My neurologist was pleased that I was taking Alpha Lipoic Acid, but he was not the prescriber.

JaneWest

thanks, @UnPickNot. I will continue to be patient. I'm 6 months post chemo and I still can only walk short distances. If I walk or stand too long, my feet get really sore. Now that I've heard how long it can last for some people, I have a better understanding.

kastoyles

I do have a slight neuropathy in my toes and in the heel of my left foot - I didn't get any in my fingers. The doctor told me that nerves regenerate at the rate of about a millimeter a year - so it will be slow. The amount that I have is not debilitating and I usually feel it more at the end of the day and quite often in bed.
Is Alpha Lipoic Acid a recommended supplement to help the neuropathy?

Sunflower

Cannabis oil is the best for neuropathy!  

KarenL

I'm 2 years post treatment and still have some pain in my hands and feet. Worse in the mornings after lying in bed all night. It limits somethings but I find if I take small breaks during an activity it helps a bit.

Nanakaw

I'm trying 100 mg Vitamin B6 / day and 200 mg /day of N-Acetyl-L-Carnitine.  My Dr recommended these over the counter remedies. Vitamin and Health stores carry them. Im finding that these relieve burning sensation but not numbness. Take with food or they make you nauseous. They cause flatulence and diarreah but not a concern after getting constipation from chemo. 

FionaB60

Hi all, I developed severe neuropathy during chemo and now 2 years post chemo I still have it. Mostly my feet and lower legs but if really fatigued my hands and lips and tip of my nose. I also deal with rheumatoid arthritis which has complicated the issue for my feet particularly. When the inflammation is bad the neuropathy really kicks in and vice versa. I have numbness in 4 out of my five toes and some of the base of my feet and tingling up my lower legs. I am on pregabilin because the pain was so severe that I couldn't walk much or have anything touching my feet. My gyn oncology team have suggested that it may not get much better. I really watch my fatigue levels now and find that gentle foot massages releases the tension in my feet. I must admit this has been the most annoying side effect of chemo and has changed a lot of my activities. I am handling it and I know we all have different reactions to the chemo - the neuropathy was the worst and continues to be my biggest struggle.

MarilynOCC Moderator

Hi @FionaB60.  You have a rough time with this, particularly on top of the arthritis!  I gather the drug you are on along with the foot massages do help a little bit. I'm sure after 2 years you have received a lot of information about this, but here are a couple of websites, if you haven't come across them already.  
Memorial Sloan Kettering
https://www.mskcc.org/blog/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment#treating-the-effects-of-neuropathy
National Cancer Institute in the U.S.
https://www.cancer.gov/about-cancer/treatment/research/peripheral-neuropathy

Have you been seen in a pain clinic at the cancer centre?  You say you are "handling it".  What does that mean?  You mention you really watch your fatigue levels.  Anything else?

FionaB60

Hi @Marilyn what I mean by handling it is that I don't let it get in the way, mostly, of my normal activities. I also wear shoes all the time. First thing in the morning I put on my crocs so that I can get moving for the day. My feet work better when I have shoes, so no more bare feet for me, except in the shower. I also have a non-slip mat in our tub so that I can get the most grip while standing there. It really is all about adapting to the new reality of life after cancer treatment.

Thanks for the articles, they are helpful. I keep looking for more information to keep on with this new normal of mine.

MarilynOCC Moderator

Hi @FionaB60.  Sounds like you've really learned what works and how to take care of yourself.  Do you have further thoughts about this @JaneWest @Nanakaw @kastoyles @Sunflower @KarenL @UnPickNot @Flowergirl ?

kastoyles

My GP referred me to a neurologist for assessment. I do have some nerve damage, but nothing marked. He also wanted a complete blood assessment to be sure there was nothing else causing the neuropathy and everything seems to be OK. I have been getting reflexology foot massages for a couple of months and it seems to be helping. The worst spot that I had on my heel seems to be much better.

JaneWest

I just keep moving; I'm doing yoga and pilates reformer which help I'm sure. Impact activities aren't great, so walking short distances and for short periods is best for my feet. I wear socks most of the time to keep my feet from getting cold. I also massage my feet with cream. And definitely the footwear is crucial! Nothing touching the toes. Oh, and crossing my fingers! lol

KarenL

I have to wear shoes all the time and have found a foot cream that helps with the pain. My doctor has found that I have arthritis in my hands so I have some pain pills for the days when it is really bad. I try not to get my feet and hands too cold or they are very painful.

jsullivan33

I am so helped by the comments I have read here, as neuropathy in my feet has been a challenge for me pretty much since the beginning of treatment. It is more intense now at the end of chemo. My GP sent me for cannabis assessment and I was approved for medical use. My daughter made me a salve from the dry cannibis - it really works quickly and effectively (it reeks a bit 😤), and I can also take the oil form sublingually before bed to head off the night neuropathy. 

Linda

I have neuropathy in both shins, both feet and fingertips. It’s coz I had chemo 2 days ago. I’ve been using cannabis oil and it has been a huge help. Glad to off the opioids that we’re not even taking the edge off. The cannabis oil (cbd oil which doesn’t make you high) is fantastic ! 

jsullivan33

Hello @Linda - exactly my sentiment. The cannabis seems to work as both a pain and neuropathy blocker and an antiinflammatory. Glad to learn that it helps you to use the CBD-rich format. I read your intro story and am impressed at your courage and resilience. Hope you have more treatment options available and that you will continue to share your journey in this dialogue. best, Judith

Unknown

Hello all I also have mild neuropathy in my left foot.  My last chemo was April 2017, the oncologist suggested trying vitamin B complex daily.  I have been taking it for 3 months and it does seem to help. I walk an average of 8 kilometers or more daily, therefore I was quite concerned with pain in my feet.  

Elsie13

@cathy1960, I too, finished chemo in April 2017. I have neuropathy in both feet, sometimes more so on the left. Sometimes it feels like there are little balls of aluminum foil rolled up inside my shoes. The strange thing is though, when I'm in Zumba class, it doesn't bother me so much. Maybe it's because the zumba steps can be a bit complex, and I'm so busy memorizing the combination, that I'm totally ignoring any feedback from my feet? 

UnPickNot

Elsie13, mind over matter! If Zumba works for your neuropathy then I say it is a win win! Talk to your doctor about supplements like the ones talked about in this chat stream. Maybe there is something here that will help you with your little aluminum n
balls. 

Flowergirl

HI @Elsie13 and @cathy1960 and @UnPickNot - I also still have the tingly toes (2 years onward) - I find doing less impactful activities best and a warm or cold soak of the feet when they are really giving me trouble seems to help.
Someone suggested a cream that diabetics use for nerve pain- I'll need to look into that.

UnPickNot

4 years into this journey and I have been putting up with the ice block feet - duh - put some socks on! 
Never think that sharing the small or obvious isn't going to help someone else!
BTW I love my UGGS all year round. Would never have thought that before as I always had such warm feet. But they are my slippers (I do not wear them out of the house) and I never wear socks in them - always bare feet. My feet love them. But man oh man - look out socks and sandals - here I come!

Elsie13

I was looking through our advertising flyers and there were some running/training shoes on sale for $40.  I can't resist a good sale, and I'm always looking for something that will be good in zumba class. (You're supposed to get new exercise shoes every 3 months???)  So a couple of days later I tried on the shoes and I bought the shoes. 
     So then I'm at home and I'm doing some low-impact aerobics to really test out the shoes.  But my left sock must be all wrinkled?!   So I take off the shoe, but my sock is fine.  Maybe I shouldn't have bought these shoes?  It's a brand I've never heard of. The insole in the shoe, however,  is fine also. So I'm in my sock on the wooden floorboard, and the floor under my left foot is all lumpy?! So I'm guessing how the neuropathy plays out, some nerve endings are damaged and some are fine so we get that super annoying 'lumpy'  sensation? 

MarilynOCC Moderator

Hi @Linda @jsullivan33 @KarenL @JaneWest @kastoyles @FionaB60 .  I'm wondering if any of you have some experience with what @Elsie13 is talking about?  Any thoughts/suggestions for her?

jsullivan33

I was told that my neuropathy would settle down with time, and it has. I still have it in my feet  but less intense. I found that being in a sauna, steam room or hot water such as a hot tub intensifies it, so avoid these situations. I applied a cannabis cream prepared by my daughter and found it very helpful. As I will restart chemo tomorrow, I expect the neuropathy to return, and am prepared for it.

kastoyles

I experienced similar symptoms. I thought I was standing on my pant leg - nope... My toes are much better but my heel has not improved as much. Tonight it's throbbing a bit, but it's not debilitating.  I understand it takes time to heal, and it may never heal completely. Another aspect of life after treatment. We adjust and we cope.

Linda

Hi @Elsie13 it’s been 3 months since chemo and my neuropathy in the bottom of my feet is much less now. Cannabis oil helps when I need it. I’ve also used Lyreca (aka Pregabalin) which helped before I discovered the cannabis oil.  Good luck and hugs to you @jsullivan33

Flowergirl

Hi everyone - just a reminder to check in with your Dr. team or NP about taking the Vitamin B6 and Vitamin E to deal with the tinglings...during or post treatment. It did not do anything for me on the first go around but helped on the second. So it may be worth a second ask for you. Again, please be sure to check taking this is ok for you Before you try (it may interact with other drugs/treatments/conditions).
If you get it prescribed (vs buying off the shelf) check in with your coverage if it is a provided benefit or there is a possibility you can submit for medical expenses. Good luck.

angel27

Neuropathy in my feet is my major side effect 3 plus yrs since ending Chemo   As I recall they cut back on taxol in last few treatments. I have been taking vitamin b complex since and it is slowly getting better. But I have to keep my feet warm and in supportive shoes or sanders. Have you tried vionics ?