Stopping neuropathy – one of chemotherapy’s most challenging side effects

I really identified with what Judith had to say about how her life changed so drastically. I was even almost a rager til I was 75. I organized, introduced people, never missed a party, cooked and served dinners on our terrace in the summer for even 12 at the table. Now I’m 79 and in July blam all of a sudden something was wrong and it seemed pancreas. But in September came the diagnosis of nonHodgkins lymphoma and yesterday I had the first part of my 3rd cycle of chemio. The first was so strong that it landed me in the hospital, I was so debilitated. Now I am leading the life that Judith describes. I live in Liguria Italy and the sea has been so much a part of my life. Now it makes me sad as the near future is so uncertain. I didn’t realize how serious was losing sensation in my fingertips which was caused by the firstblast of chemo but now it has dawned on me, researching on the net and this excellent forum that as it is at present, never for a moment not feeling this neuropathy which I hope will not worsen as the prospect of living with it as it is now is hard to accept.And of course the rest and now that cold season is in in the tiny village where I live, somedays I just stay on the couch, no energy soothingly weighed down by my cats. Food? Gotta eat, always a weird kind of hungry and nothing satisfies. Getting out is the appointments related to this which has befallen!

I’m 62 and I’ve had CIPN for nearly 10 years now after treatment for Stage 4 colon cancer in 2013/2014 which I’ve had to adapt my life to work around as much as possible – but the important thing is I’m still alive. I don’t think I would be without the cocktail of chemo, radio and surgery.
At first it was mainly my feet, then hands, then all over my whole body. My hands soon improved after chemo but if I stepped on a small pebble it felt like a shard of glass. My wife found out about bamboo socks which I wear in bed every night and they do make an amazing difference.
The ongoing symptom I have is that any exposed skin feels `cold’ and very slightly painful below ~22degC; arms, legs, ears, nose – but when I touch them they’re warm so it’s not a lack of circulation.
It’s good that CIPN has now been recognised as significant for survivors because it is a life-limiter – and let’s face it a lot of people like me weren’t expected to survive long enough for it to be a problem.
When I read through what the damage was (protection around nerve endings burned away) and talked to my oncologist & GP it helped to come to terms with the fact it’s irreversible. So even though it affects my life for most of the year in the UK because my skin is telling me I’m uncomfortably cold I’m still looking for other ways to reduce the impact on my life that doesn’t involve:
1) wearing an all-over body stocking for most of the year – too weird
2) taking a medication that claims to blunt the symptoms

I really feel sad fpr the many of you who are suffering. I’ve just had 4 cycles out of 6, fpr low grade serous ovarian. I’m on carbo/plax which has a high rate of neuropathy..tto help attempt to minimize the damage (I’m an artist) I use a good neuropathy cream Neuropy hemp rescue balm from the UK. It’s not cheap but last night my neuropathy showed as incredibly itchy palms and soled and two panadol amd some cream later I was ok again.. Also, for the first time ever I’m doing acupuncture. You need a brilliant one but I feel its helping. I definitely have numb tingly ringers then palms, soles then calves. But it’s not yet getting too unbearable. You have to try for yourself but even my oncologist said she’s read good things about it!

Seven years ago i was diagnosed with stage 3/4 myxoid liposarcoma, went through chemo, radiation, and two surgeries. My neuropathy started during my second to last round and progressed after chemo was done. I have been on SSRi’s, opioids, and have had a spinal stimulator put in. I still have chronic pain that’s not very controlled. My body produces lots of scar tissue so its surrounding the leads on the stimulator, thus making it work less efficiently. I have one of the newest stimulators, and it has given me about 10% reduction in non acute pain. I have noticed over the years that stress/anxiety greatly effect my neuropathy. I have it in both feet and both hands, its enough to drive you crazy!

I was diagnosed in 2021 with carcinoma breast cancer stage two. I was fortunate it did not travel to my lymph nodes. I had to keep the cancer in me as I did my chemotherapy for 14 months, as well as radiation for one month. Now I am experiencing neuropathy in my feet and legs cramping up at night during the day. My hands are also feeling very tight as well as my fingers. Before I was diagnosed at age 68, now 70 years old. I was in very good shape very healthy. Chemotherapy really did its job on me. I thank the good Lord above who is Jesus that got me this far and my family, I am doing research to figure out how I can at least help myself. The articles above were very helpful. I am so thankful that I am still living. I take each day one day at a time. I fill my mind with prayer and Positive thoughts. We all must forge ahead and don’t look back.
Thank you so very much.

I had stage 3 bowel cancer 6 years ago and had 8 sessions of Capecitibine and only 4 sessions of iv Oxaliplatin due to the terrible side effects I had and which got worse at each iv session. The Oxaliplatin was stopped at my request as at the last session the side effects were so bad. I started with peripheral neuropathy when having chemo and this has gradually got worse. My hands and feet and sometimes face tingle all the time and I now have problems with walking. I drop things all the time and have problems picking small things up. My fingers have now started to hurt when trying to open jars etc. I am very upset about this and worry what may happen in the future. My GP has just referred me to Podiatry. The chemo has also affected my bladder, gums and eyesight. I was diagnosed with slight cataracts a year after finishing chemo and have terrible fatigue and aged quite quickly. I regret taking this drug.

I had stage 2 colon cancer for which I had 10 inches of sigmoid removed with a loop ileostomy that was reversed a year later thank God. I underwent 5 weeks of 5 FU then 8 treatments of FOLFOX (including oxaliplatin) before tingling and numbness persisted from treatment to treatment (each treatment was a fusion then a pump for 3 days followed by 11 days without). I am a manual physical therapist so sensitivity in my hands is extremely important. Chemotherapy ended 15 months ago and I no longer have symptoms in my hands and fingers and the severity of the symptoms in my feet varies from day to day and has definitely waned from its peak. My symptoms include reduced sensation, although I do still sense light touch and pressure and at its worst I feel like I am walking on bubble wrap covered with a thin layer of sand. I work on balance daily and mobilize my toes to keep them supple. I don’t know that I will ever be free of foot symptoms but I am thankful that I have no symptoms in my hands. For those of you who still have numbness in your feet, it is imperative to work on balance every single day without fail. Trying to stand on one foot for 30 seconds a few times a day will help. Also spending time without shoes and socks on your feet sot that you can fully feel the floor would be helpful to retrain the nervous system, to whatever extent it is possible. Also, make certain to drink enough water. One of the books I read while recovering was entitled “The Body’s May Cries for Water”. The author, a physician, treats a variety of disease processes with water citing that most of us are chronically dehydrated. Cells that lack sufficient water do not function efficiently and our bodily processes, including healing are impeded by inadequate water intake. I am certain that drinking enough water has helped me to recover as well as I have. Be certain to have you vitamin B levels monitored as sufficient levels help to promote healing of peripheral nerves.

I read all these comments but was most toched by judith’s. I too wonder who I am. I am a new person aftr hving cancr, surgery, chemo, and radiation. I can’t believe that neuropathy cannot be cured. I suffer it somewhat in my hands but very badly when I walk. I live in Manhattan and love to walk. But now I find myself leaning aginst buiildings because of fatigue and having people ask me if I am okay. A year and 3 or 4 months ago I was the happiest prson ever. Never sick except for having my gall bladder out. Went to the gym 3x a week for silver sneakers classes. Danced every chance i got. But now I just sit home and sleep more than I should. Cancr-free thank God But not feeling alive!.

I undertook 7 cycles of chemotherapy: Oxalyplatin and Capecitabine tablets, followed by radiotherapy. Treatment for my stage 3/4 bowel cancer ended in January 2023 and following scans and investigations the tumour was no longer present in my bowel. Whilst this is fantastic news, I quickly developed chemotherapy induced peripheral neuropathy. To date I have constant pins and needles in both hands and feet, can’t hold items securely: cutlery, plates or cups or fast on buttons on shirts trousers. Can’t walk any distance without a stick, have trouble driving and as such have ceased this activity over the last 4 months.
I’m eternally grateful to have been given the opportunity to undertake treatment but the ‘CIPN’ is debilitating and has reduced my ability to self care, socially interact etc.
I’m enlightened by continued research into ‘CIPN’ and live in hope my symptoms will dissipate over time, their constant at the moment with no change in presentation.

I am a 65 year old male in relatively decent heath who had Colon cancer diagnosis back in 2019 , stage 4 .
My treatment was the usual chemo , radiation,and surgery to remove tumor. The surgery was successful,and I’m cancer free as of now, Sept.,2023. The problem is , my neuropathy didn’t start till about a year ago , and is getting more prominent . Thankfully , it only effects my feet so far ,. and is worse if I sit even for a short period , and when I stand , my feet are in pain until I take a few steps .If it progresses any further , walking during work ,.will get to be a job killer. Hopefully , these dedicated doctors will find a solution for people like me .

I finished 7 months of chemo sitting in that chair for 5 hours each time, it was not until the last treatment I was found to have CIPN which has affected my feet and hands. Now it is over a year later and the tingling and numbness has increased in my hands particularly at night and then my entire right side of my body from my hip down to my feet. I at times do not even realize I have lost my slipper or shoe and also not aware is my sock is on or off. I was happy to have found this site today knowing that someone is seriously attempting to combat this. I am tired so much of the time, along with chemo brain fog, that causes me to have words come out incorrectly or I forget them altogether. Light headed an dizzy much of the time, can no longer drive, nor attempt to do tasks which I once could do so easily. I am not one to get depressed but lately it is hitting me on a more regular basis as these symptoms appear to increase and cling to my body. I have become a hermit in all aspects and once was a joyful multi-tasker spinning through any given day. Difficulty going up and down the stairs, house cleaning, etc. My social outings are now compiled of medical visits. My joy is my little Yorkie and going out into my gardens on days when I can tend to them. I cry more than I ever once did. I know I am fortunate to still be here my cancer was high grade stage three endometrial serous carcinoma, surgery took out a large tumor with the total hysterectomy, and radiation came after for three targeted times. Most of my days comprise of sitting at this computer where I now type words to those I do not know. I pray researchers shall find the golden key for this CIPN that weaves through our bodies. Every 3 months I go for cat scans w/contrast and every month labs and port flushes. I know the chemo kill those pesky cancer cells, but now I feel I am a changed woman one I often no longer recognize. It took away the cancer cells but left me with a body no longer filled with joy, a spirited life. My hair was lost and came back in stringy straight bald spotted ways, I grew old before I was ready to. I also no longer wish to befriend people, spend time with them, etc. I do write to some via email or facebook and a few family members who live far away via a lap top my son sent me. My days now are mostly all the same from early morning to closing down at night, no surprises, no adventures, no spontenaity. I leave you now with all my thoughts it is a gift to read what all of you have been going through as my started during covid and groups to gather were not allowed in the hospital as they once were for cancer patients. Stay strong, add as much sunshine as you can to this journey, and do not be afraid to reach out to others should you feel the need.

Thank you for this information. It has helped me to understand more fully some of the side effects of the drugs I have been on. I am due to change to a new combination of drugs soon and hope that CIPN will be reduced. Hopefully our fantastic research scientists will eventually breakthrough with a drug that can remove this very unpleasant side effect of these life saving drugs.

Excellent article. I was diagnosed with Mild axonal peripheral neuropathy twenty years ago (idiopathic, as it was not caused by diabetes, chemo or alcohol. Hopefully this valuable research will extend to helping people with various forms of neuropathy. My neuropathy is now classed as Severe, I can only drive my car with hand controls and need a wheelchair a lot of the time. Researchers in America are working hard to find a solution for neuropathy and the damaged nerve endings but funding is always the problem.

A very informative article. My sister has experienced this condition of numbness in her hands and feet after receiving chemotherapy. I had chemotherapy 23 years ago for breast cancer and also felt numbness in my fingers. It did not last fortunately. Hopefully, research will be successful in finding a remedy.

A very enlightening article and Andrea should be commended for speaking out about her awful symptoms in her feet. The more people know and talk about, the more the scientists can change drugs and try new approaches.

I was diagnosed with Oesophageal Cancer in September 2021. At the age 69 then, the Oncology Team felt the best way to eradicate it was to cut out the affected area. This would’ve entailed extensive surgery but my body was not strong enough to undertake it. One of the alternative options was to remove the Mucosa layer that was affected. However the MDT decided it was best for me to have Chemo& Radiotherapy. Little did I know how this would cause CIPN. This was not adequately explained to me and I was not given the choice. In the event, the treatment was not 100% effective and as a result it was decided that in October 2022 I did undergo surgery to Endoscopicaly remove my Barretts and the Mucosa and Sub-Mucosa layers. In the meantime and since then my CIPNnhas continued to get worse, to the point that it affects my ability to sleep, my mobility is severly impaired as the CIPN in my feet has made walking any more than ten to twenty yards quite difficult. Even Driving an automatic car for more than half an hour is mostly out of the question.
CIPN has also affected the sensitivity in both hands and things slip out of my grasp. I now have to be very careful when I lift or hold anything.
My question is: Can anything be done to reverse the effects?

I was very interested to read about chemotherapy and the side effects of neuropathy. I have been cancer free for over 8years now, having had colon cancer. I have been left with neuropathy in my hands and feet, and do you believe research will ever find a cure to mend the nerve endings.

Incredibly informative and as a sufferer of CIPN, I can empathise with Andrea and others. My own treatment for bowel cancer involved the drugs forming FOLFOX (the OX is oxaliplatin) and I managed 11 out of 12 sessions before the PN was excessive. Thank God and brainy scientists for studies like this, that give so much hope for the future.

I have peripheral neuropathy and find it a nuisance. It started in 2017 with my first set of chemo. When I complained about it my dose was reduced. In that way it stopped from getting to my hands. I understand Andrea losing her flip flop. I have had the same problems round the house. At times I have the opposite, it feels like I have crumpled socks on, I look down and see I am bare footed! I make my feet do things like pick up my socks from the floor to try and counteract the CPN. It helps. However when I go to bed it is difficult to find a comfortable position due to the CPN, especially when lying on my left side as it then affects my left arm as well. When my cancer had the cheek to metastasise the CPN was taken into consideration and the chemo in 2021 was changed. Now I am on Letrozole which is keeping the cancer stable. The CPN continues but hopefully is not getting worse, except when I am tired.

A fascinating read and hugely relevant to my current cancer treatment. I’ve just had my 9th cycle of chemo including oxaliplatin. I can feel the effect on my nerves increasing rapidly. The team treating me, who have been fantastic, have explained carefully the balance between peripheral neuropathy and chemo treatment. Personally ,obviously I want the treatment to succeed, but I’m not sure I want to cope with permanent intrusive nerve damage. It’s the dilemma causing me most concern at the moment.

Having been through two different cancers and different chemotherapy drugs , I still experience neuropathy and can be cold in the feet both in winter and summer. It would be good if another drug could be found.