Hello all. I am brand new to this forum and would love to find some help and hope from my fellow cancer sufferers. I finished chemo at the end of July, 2016. When initially discussing my chemo drug, Cisplatin, the pharmacist told us to look out for difficulty with buttons and picking up coins, and tingling and numbness in the toes and fingertips. It didn't seem to happen during chemo, thank goodness.
But after my final treatment, I noticed numbness and tingling in my toes and fingers, and it did not fade. I found it irritating, but not debilitating. Oh well, the small price of saving my life I thought. Then a month and a half later, BOOM, it hit me hard! The numbness and tingling rapidly crept up my arms and legs, and every nerve shrieked with pain. Practically overnight, my ankles, knees and hands and wrists became weak. I hung onto stair rails and walls as my balance was gone. My hubby had to hold onto me when going out to save me from falls when I stumbled. I couldn't get up from a crouched position without help, and my feet screamed if I walked too much. I dropped things. Fasteners, lids, caps, buttons and ties are now all too difficult, even writing with a pen. In order to do my Christmas shopping it was online from my couch, and via wheelchair around the mall.
My oncologists admitted that "Yeah, Cisplatin is a real culprit for that." They did not question the cause of my neuropathy, as they knew I was strong and healthy prior to chemo, other than having cancer.
No one described how awful it would be and how it would change my life overnight. I am 50 but now feel like I have the body of an 85 year old! They offered me pain meds and will send me to a nerve and pain specialist. No one knows how long it will last, but most patients are better within a year after chemo. Some never recover from full blown neuropathy.
I am interested in commiserating with fellow sufferers, but most of all I would love to hear from those who suffered and then recovered. Please, even though you are fine now, take the time to comment, so that we who suffer can have hope. Please!!! Tell us how long did you suffer? What were the first signs of recovery? How did you cope?
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Marzipan
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Hi, I'm sorry to hear you're going through this. I had only been aware of taxol causing neuropathy, and not platinums, but after some research, I see they do too.
I have no idea if this will help, but, when my mom was getting chemo, I was giving her a lot of L-Glutamine (powder, but pills). I had looked into it, and it's supposed to help with neuropathy. I even know another survivor who told me she was prescribed glutamine after her chemo because the neuropathy was really bad. I was giving my mom high doses, like 10 grams 3x's a day, and she never really had any nerve issues during, or after. There were about 3 incidences of her hands itching terribly, but went away in 30 mins or so.
Please of course do research first to see if it may work for you, and proper dosing, and run it by your doctor or nurse too.
Hi Marzipan........I am only halfway thru my carboplatin regime and already have itchy itch hands........noting in comparison to what you are experiencing. I just wanted to add though that my husband was on a trial chemo for stage 4 bowel cancer and suffered vey badly with neuropathy, it too was very debilitating or him. Once the chemo stopped it was about a year before he began to recover from it, his fingers affected the worst. He is now in his 6th year of remission and just had another all clear scan! Hope you soon recover. xx
Thank you triplists! It gives me hope to think I may only have 9+ months of suffering left! Hey, not longer than a pregnancy. Lol. Maybe I can do this!
Were you given cisplatin as first line treatment? If so, this sounds rather unusual and I'm curious as to why.
I had neuropathy with carboplatin and worse with taxol. My hands did recover but I still have some residual, but liveable with, neuropathy in my feet. Not as bad as you by a long way but I do remember not being able to hold things properly and not feeling safe.
Hi Mac27! I was told Cisplatin had been effective on the small number of patients they had seen with my type of rare cancer. I was scared and so anxious to get treatment for the monster within, I think I would have tried anything. I didn't even research this drug before starting chemo. My mind was just in a dark and desperate whirl at that point.
Thanks for your story of recovery, well mostly recovered, which is good enough for me.
I am in the midst of 2 types of peripherial neuropathies - one numb and the other painful. The first was caused by taxol and the second probably by avastin following the taxol. I finished with taxol/carboplatin last March and the numbness in my fingers/toes was getting better. I was prescribed cymbalta for it. Then in June the painful neuropathy started with the avastin on its own. I was prescribed lyrica on top of the cymbalta. I have 2 more sessions of avastin to go. The cymbalta and lyrica take the edge off the pain. physioherapy has helped hugely with my ankles and I recently discovered reflexology to be a big help. Ice cold for my feet really helps going to sleep. I have also been prescribed a cream called zacin which contains capiscum- the bit which makes chilies hot. the idea is the it overwhelms your nerves and they quit sending pain signals. acupuncture is also very helpful. I would suggest getting a referral for a nerve conduction test from your onc to see what,if any, nerve damage you have and following that a referral to your hospital pain clinic. I hope you feel better soon - pain as a result of the treatment just feels like an insult.
Good advice! Thanks for all the ideas. I am on a drug like Lyrica, but I need to rattle my onc's office to hurry my first appt with the nerve specialist.
Hello,
I haven't had this but just wanted to wish you well, that sounds truly awful. I hope you find good news on here.
I have some residual neuropathy from cisplatin and I'm now on low dose taxol weekly. I'll look at glutamine.,I've heard that vitamin B6 can help so I'm taking that. Some people have also said exercise helps.
B6 can help with neuropathy too, but careful with dosing. Too much, and it can itself cause nerve damage. I don't know how the glutamine works, but it does seem to be pretty safe, even in larger doses.
I still have a peripheral neuropathy following paclitaxol & Carboplatin, I am 2 years on from finishing treatment. Mine is nothing like yours and is totally manageable. I would suggest you ask for a neuro consult as it doesn't sound like yours is 'normal'? acupuncture is supposed to help as is reflexology but we are all different. There are drugs for neuropathy which help with pain, they can be soporific depending on the dose but would be worth a try, your oncologist should be able to advise you more? I take B12 which is supposed to help. Go back to your oncologist for help with this as it seems you need a speedy intervention. I've not heard of a neuropathy getting so much worse once treatment has finished, mine has stayed pretty much the same although it is much better in hot weather than cold. Good luck with your symptoms and hope it starts to improve soon, take care ❤️ Xx
Hello- I am 5 weeks out of my chemo taxol/carboplatin regime and I have neuropathy in both my feet. I was told to take 10 grams of glutamine daily as well as a B-Complex. i have fallen and have a hard time getting up off of the floor. I get plenty of exercise and walk daily. I fine I cannot go barefoot as this really messes with my balance. a good pair of hard soled shoes makes a big difference. the numb feeling is awful. So far the glutamin has not caused any difference.
I had a really bad fall and cracked two ribs so be CAREFUL. I was told it may take up to a year to get over the neuropathy. i am hopeful.\Best of luck to you!
Oh I am so sorry to hear about your bad fall! I hope those ribs heal quickly as they are so painful. No coughing allowed! Yes, I go slow and they want me to use a cane or walker, likely to avoid what happened to you. Perhaps all of us neuropathy patients should be moved to nearby senior's homes until we recover? It seems they are best equipped to handle our symptoms.
I developed neuropathy in my feet and finger tips after 3rd dose of Taxol at 75 % so my oncologist decided to not increase the dose and I think that was the right decision. It lasted only a few weeks in my finger tips but the feet have been more of a problem though nothing like what you are experiencing which sounds really extreme.
I followed advice from Suzuki on this forum and have been wearing Skechers shoes ever since which are both supportive and extremely comfortable to walk in. A physio also suggested rolling a tennis ball under each foot to increase circulation and this has stopped me getting awful cramp in bed.
Recently my feet have become more painful which my oncologist thinks could be a sign that the nerves are starting to recover. She told me originally that it would take about a year for recovery from the neuropathy which would bring me to April 2017. If I am going to be on my feet for a long time I take 2 paracetamol which give relief for a couple of hours.
That is my story to date but your situation sounds much more serious and extreme and like others have said I think you should push for urgent referral to a neurologist who can find out what is going on and get some appropriate treatment for you.
Do hope you will soon get some help with these awful symptoms.
Hi Barlow, I am glad you find the sketchers comfy but now my physio told me they are fine around the house but not for long doggy walks. She recommends asics gel contend, not very expensive top of the range asics with the gel balances the body. I have had hip problems and I am hopefull that they are on the decrease. I have traction and physio. For going out just make sure you have shoes with support and also dont forget the epsom salts bath or foot bath as the case may be
Thanks for that information. I was told that I shouldn't get Skechers wet, but hadn't thought about needing stronger shoes for winter. I will look out for those you suggest above.
Hi I finished treatment on the 9th September and had peripheral neuropathy quite bad in my hands and feet, onc said both carbo/ taxol can both have caused this, I have noticed the last two weeks have been a bit easier and not as severe. I also now struggle with Tinitus in both my ears but noticed that is also not as severe. I am sending you lots of hugs.
Oh yes Ellsey - I had some hearing loss assessed (higher range) plus lots of ringing, buzzing, whistles, static, etc in my ears too. Five weeks later, it all started to improve. Four months after finishing, all is good. Hearing is back and tinnitus is rare. Hope this is your story too. Hugs back!
Wow, this is my first time here, also searching to see if anyone else is experiencing what I am. My chemo for colon cancer involved 3 drugs. One was called 5FU which I believe was the neuropathy culprit. They removed it for the last two treatments because I was complaining about the numbness. I just assumed that when the chemo ended the neuropathy would improve. It ended in mid-March. It's now the end of May and it has increased tremendously and I am getting more and more alarmed each day. Even today is worse than yesterday. The numbness in my feet, for example, is going almost up to my knees now. I called the Oncology nurse a couple of weeks ago and she basically said there was nothing I can do. But it's looking to me like many people are doing many things and not just taking it lying down.
I dropped a bowl of cereal on the rug so the next day I decided to eat in the kitchen, where I dropped it on the way to the kitchen table. I was handed an ice cream cone in the mall and it fell right on the floor. My foot goes on the gas and the break at the same time. I could go on but I'm sure you know what I am talking about. I can really identify with all you say. I am 69 and I feel 100. You're the first one I've heard mention weakness. My hands and wrists are extremely weak. I can't open jars etc. I can feel nothing with my fingers except for tingling until I try to use them for something at wich time they hurt like heck.
I also lose my balance, fell once, have an awful time on stairs if carrying anything. And feel very week by the time I make it to the second floor. I just feel like I need to know if what is happening to me is normal or worse than normal or permanent. The thought of the latter scares the heck out of me. I never got to retire. I could never tie a hook onto the fishing line as I cannot even tie the big orange ties on a green garbage bag.
I just noticed that you started thisnthread2 years ago so I will read on and hopefully learn that you got better.
Hello to you, and first let me say how sorry I am that you are suffering as I did. I went to a neurologist and was tested for nerve function, which showed mid grade neuropathy in my hands and severe grade in my feet. She was confident that within 2 years I would see improvement in my strength and quite possibly recover to a considerable extent. She was right.
My strength starting coming back in mid 2017. I could write again, my ankles became stronger. No more cane for walking. Around February of 2018, I started noticing improvement in pain. I dropped my pain meds from 4/day to 2/day. My balance is back - I can even wear heals for short periods!!!! I seem to be turning a corner. I still cannot stand for long periods - no queuing!
One thing to warn you about, recovery is uncomfortable. My knees hurt like the devil in the night, my legs would throb after exercise and I had to use warming bags and ice packs on my feet to get through the night. My hands were a nightmare, aching so much that I was constantly asking my hubby to knead my thumbs to give me a pain break. On the exercise note, since you can't walk, try swimming or biking. I did aquafit all winter and am starting biking this summer. Keeps the pressure off your feet while you get that circulation going!
My feet and calves are still numb, and all my finger pads. Not sure if they will ever recover. But if I fully recover balance and strength and the pain recedes 75%, I will consider myself VERY grateful.
Also, please be very careful in the night. You are using your eyes for balance. Once the lights go out, or you close your eyes, over you go. I tipped over and crashed headfirst into my closet. Didn't break anything thank goodness, but others have. Don't be shy to use a cane for balance.
I heartily wish you a more speedy and easier recovery, but even up to 5 years there is hope. My neurologist says she has seen recoveries up to 7 years, and now she says, "Never say never."
Oh, oh. One more thing to add on the dropping problem. Watch out for your credit cards. I would stand at the cash and realize my card had slipped out of my numb fingers and onto the floor. Happened so many times, but I got pretty good at scanning the area before departure!
Thank you so much. Sounds like there may still be some hope for me yet. I must run off and get the grandkids ready for school as my daughter is away for the week. But I will come back and read this again more slowly. crazy day again like yesterday.
Hello. I know your posts were some time ago. If you're still around, did you ever find a solution? Your description sounds much like that of someone I know, and she has vestibular symptoms on top of worsening neuropathy.
Hello! First of all, please convey my sympathies to your special someone. Did all her symptoms come from chemo treatment? The platinum-based chemo drugs commonly effect vision, hearing, and peripheral nerves.
Unfortunately I am not aware of a cure for this damage other than time, and it can be permanent. Some treatments are mentioned in the responses above, as well as exercise to increase blood flow to assist in healing. Pain meds can be helpful but do not always offer significant relief.
I just want to offer a different message than the chemo nurses who constantly said to me, “Whatever state you are in one year after chemo is likely permanent,” Well, not for me. My neuropathy is only improving 1- 2 years after chemo. So there is hope! And I have been NED for 1.5 years. 🎉
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