Chemo-Induced Peripheral Neuropathy (CIPN)

Has anyone out there suffer CIPN? To what extent? and for how long? If it has gotten better, how long did it take?
I have had CIPN since 2007. I had 6 sessions with Cisplatin. The neuropathy developed overtime and it worsened 3-5 months after last treatment. It was severe and mixed. According to my dr. I was among the minority that get so terribly affected by the medicine. I would love to know if anyone out there can relate to this condition. I would love to be in touch with someone who understands what this is.
Thank you all!! Love and Light!
Capechic

Edited March 3, 2009 at 12:19 am

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I understand what you are talking about. I have the same for the same reason. I had treatment in 2004 and about 6 months after, the neuropathy got worse and continued to do so. As it stands now, the only medication that works for me is hydrocodone. I have to take 5mg every 4-6 hrs. I try to keep this very minimal. I also use cushioned socks and use these even for bed time as the warmth helps. Foot baths are good too. There is a posting on here full of suggestions some of which I am going to try. It can'y hurt! I have the pain worse in my feet, where my hands have more numbness and that prickly feeling rather than pain. But the pain in my feet is severe at times. I am told at this point it is permanent but can be managed-you just have to hit on what will work for you. So please check out the posts under "neuropathy". Karen

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Hi again Capechic
I have neuropathy that only affects the balls of my feet. My feet get painfully cold and my toes are like ten little nerve endings hanging out there. I don't understand how something can be numb and painful at the same time.
I had neuropathy starting with my third or fourth treatment and I always felt like I was stepping on something. Five years later it was much, much better, but still there. Then I had the recurrence, more chemotherapy, and those drugs brought back the neuropathy again.
Sometimes I will get a pain that feels like a pinch that will take my breath away. But that never lasts longer than a minute or two.
And now, four and a half years after the recurrence, the balls of my feet are still very numb but if someone steps on my toes, oh my goodness, I feel like I could fly right through the roof, it is so painful.
My experience has been, and I hope this helps in some way, that I just got used to it. When I'm cold I put on socks. Other than that, it is what it is, and I am used to it and have adjusted. More blessings and grace your way - Patty

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I had very little neuropathy, thankfully. In my feet, my left more than my right, while I was going through chemo (had cisplatin also). It was alleviated by wearing soxes under the covers.

I finished my chemo Oct. 4 (diagnosed with IIIc and debulked Memorial Day 2008), and still have a tiny bit of neuropathy in my fingers. My fingers feel like they're swollen a bit sometimes and I find myself massaging them some times. It helps and passes. For instance, I have no neuropathy right now.

Take care,
Lynda

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Hi Capechic:
I did the IP/IV cisplatin/taxol -6 rounds; 6 wks after final chemo treatment I woke up thinking it was back in my bones -the pain ran up from my feet and hands up my arms and legs.... it was terrible!
I was totally back to my total fitness program doing 2-3 hrs a day of cycling, biking, walking, etc. etc. and strength-training and had felt great for the 6wks....
It took about 3 mos to go away -mostly I used tylenol for the pain. Then a few months later it landed in my cyadic (spelling?) nerve and was intense!! Could hardly walk or move my left leg -this time my doc tried a 5-day steroid pack -within 2 days it was so much better -I ended up doing 2 more of these packs over the next 2 yrs -once for it hitting my shoulder and arm and the other time it was back down my leg.....
There were no side-affects from the steroid pack -I'd done these before for asthma and never had a problem. I was also told that I was in the minority!
I also ended up with peripherial neuropathy that hit my colon and bladder -that kicked in after the first round and never went away -a total vegan diet and miralax keeps it in check....
But -I did get just about 2 1/2 non-chemo years and am now in a clinical trial using avastin/carboplatin/gemzar -still doing my usual fitness and working part-time... somehow life continues to go on...
I hope this info works for you -wish I had known about the steroid pack possibly working before going so many months with so much pain...
God Bless
susan

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I just did my seventh cycle of Carbo/taxol IV, IP and have some neuropathy, mostly in left foot and tingling in hands occasionally. Early on I had arms tingling and much pain in feet but read that some take Glutamine 10 mgs TID for each treatment and for five days after and then take 10 grms a day between.

The effect was very good and has kept it mostly in check. Right after chemo my left foot feels numb and minor tinging in hands but tolerable.

I have read somewhere there is a drug they give when you are on this regimin to lessen the neuropathy.

I didn't know it could hit and worsen months after chem so thanks for the tip. I will continue Glutamine.

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Ok, I thought I was nuts! This is what I'm suffering from and hopeful (not sure what to use here) that others have some "fixes" for it.

I read on this board somewhere where a lady was having good luck with Magnesium, I started that last week and have had good results in my legs/feet. I'm taking a low dose and it's the kind bought at Walmart. I don't see my doc for another month and I don't want to take too much, but then at the same time, it's a help to me so I dunno. Doc prescribed 300 mg of Neurontin and that seems to help too.

I had 2nd look surgery in December and have been on percocet for the pain. Well, truthfully, the pain from surgery has been gone, but the 2 percocet per day that I take has been a HUGE relief all around from my neuropathy. I only worry about the damage that it may do to the kidneys and liver. I do NOT worry about the fact that it's a narcotic - could care less. Learned early on in this journey that taking what helps is all I really care about, don't give a rip about the so-called addiction part, and don't care about the words spoken to me by others about it either, I have enough to deal with without having to explain WHY I continue to take it. I only take it once I get to work and by the time I leave, it's worn off, so I don't worry about it affecting my driving abilities.

I've also found relief from a Christmas present I received. It's a massager/foot warmer. It's only temporary relief, but any relief is welcomed. I try to do this for about 20 minutes just before I go to bed. It helps me get to sleep a bit faster that way.

I'm really worried about my feet this spring when I get back on my Harley though. I hope that I don't have any problems with shifting or braking, it would break my heart to give up something that makes me feel pain free when I ride. Seriously, I took a ride last fall about a week after one of my chemo treatments and all my worries and concerns were gone. Pain was gone as well as I enjoyed all the smells, sights, and feeling back in control of life again.

Please share whatever helps you, it might help me or someone else.

Thank you,
Donna

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It is not unusual for any chemo patient to get neuropathy. Yes, some have worse symptoms than others, but it is very common especially with Taxol. I think it's a little unusual for it to worsen so long after chemo has ended though.

Mine was never severe, but I did have it. It eased off a lot after chemo was done. My onc. actually switched me to another chemo midway during one round of treatment to lessen the effects.

I hope you get some relief soon.

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When my neuropathy worsened at about 6weeks after chemo my onc. said it maybe something else because it should not be getting worse. He sent me to a neurologist. My appointment was a month away so on my own I went to an acupunturist. The acupunturist helped so much I almost cancelled with the neurogist. It turned out I did have another problem arthritis in the neck which was causing nerve damage. Saw a neurosurgeon who said I should have surgery. So far I have stuck with the acupuncturist who is now treating me for both the neuropathy and the arthritis.

When I first saw the acupuncturist I needed help to tie the hospital like gown they gave me to put on and after grocery shopping had to sit with my feet up for atleast an hour. Now I have just a little tingling in my fingers and no problem walking for 30 minutes on the treadmill and then going shopping.

So I would definitly recommend acupuncture. My insurance covered it.

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It has become not so unusual for it to become worse over a period of a few months. I was told this even before I started treatment. But after that if it continues to get worse, then that is when it might be something else and is worth looking into.

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I am 3 yrs out of surgery and 2&1/2 yrs after chemo and it still is a bother .I have spent more on shoes int the last few years than the previous twenty.
Funny weird story is I recently broke 2 fingers they are now pretty much healed but it was odd to feel pain in my fingers after the numb sleepy thing for so long.
I have refused any other meds as it affects other things and I'm just not up to that. I would suggest the foot massage baths and that switching from hot to cold and back again does seem to help.
The hardest thing for me is to try and keep from gaining weight as some times I fell like I am walking on broken glass and just can't do much of anything.I am looking forward to the summer when I can get back into the pool .Switching shoes during the day seems to help also changing pressure points .
A fellow chemo patient had terrible problems during our chemo and was given meds ,mine really didn't start till after and , she now has no probs & mine is outrageous . I wonder if the answer is to be treated during chemo no matter how bad it is.
Maybe the rare ones our Drs. talk about are the ones who didn't get treatment with chemo. Just an idea.
God Bless kate

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My chemo finished nearly 2 years ago, IV&IP taxol & cisplatium for stage iiiC ovca, which left me with severe neuropathy in feet and hands. The best treatment I got was from a neurologist specializing in peripheral neuropathy. She prescribed Lyrica, physical and occupational therapies, and also Cymbalta for a few months. Now I reduced the Lyrcia (150mg 3xday), and exercise in the YMCA as much as possible, wear supportive shoes and warm socks. My balance is getting better, I can walk long distances, and pretty much do what I want. The pain and coldness are there at times but I have learned to live with it. There are chemos that result in less neuropathy when treating for recurrence, as per oncologists. The doctors also say the neuropathy improves over time....
Best to all of you, Debbie

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Medicine is supposed to be practiced with EBM (evidence-based medicine) but there are no studies of taxane-induced neuropathy. So sometimes there is an "art" to it. Anecdotally, drugs like Cymbalta, Lyrica and Neurontin are used off-label, and it seems like a good try.

Most drugs are prescribed off-label. One must be cautious that off label remedies are fully discussed with patients and must not do any harm. A number of general practioners like to use Neurontin (gabapentin) for all neuropathy. It is already used for diabetic neuropathy and neuropathic pain and perhaps it (observationally) helps.

These general practioners having been giving it for chemo-induced peripheral neuropathy. After a work-up and ruling out other causes, they have found this to work. But again, do no harm.

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I have been fortunate not to experience neuropathy after chemo...was on taxol/carbo IV for 6 treatments, but have great sympathy for those who do. I am so sorry you are suffering with this. It just goes to show that these drugs effect everyone differently. Though no noticeable neuropathy, I have been left with occasional ringing in my ears and some hearing loss, glaucoma (does not run in my family), and have odd aches and pains in my back, side region, decrease in stamina despite exercise, and am minus some teeth. All are manageable but everyone reacts to these drugs differently. I wish people realized what these drugs are capable of leaving us behind with. I find it frustrating that so many think we get treatment and then are all better like taking an antibiotic....far from. I hope you can find something to relieve it successfully. I can only imagine how tough that is to tolerate.

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I made a few calls-interesting it is the paclitaxol that causes the neuropathy. It takes about a year for your body to recover from surgeries, chemo even the anesthesia! It is during this recovery time that some things get either better or worse. It depends as everyone is so different. That may be why certain remedies work for some and not others.

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Good morning all....I too have neuropathy and found that massage therapy does wonders. My massage therapist was able to get some of the "congestion" out of my feet and hands. I have only been 3 times but it is 100 times better than it was only a month ago. She has several cancel clients and the results have been the same. She also recommended the magnesium which I have started and it seems to be helping. Good luck in finding what works for you.

YaYa

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I'm just starting to get scared about neuropathy. I had surgery for stage 3c/4 ovca December 1 and am halfway through my taxol/carboplatin chemo. I've had three infusions and number 4 is this Tuesday.

I had surgery for a neuroma in my right foot a few years ago. Before that surgery there were days when I couldn't walk. Still had problems with my foot after healed from the surgery so the podiatrist did alcolhol injections in my foot to kill the remaining exposed nerve endings.

My foot has been fine now for a long time, until a couple of nights ago. After I get into bed the site of my neuroma has been burning. I'm scared about what that means, combined with what you all are saying, about neuropathy coming on late in chemo or even after chemo. From the neuroma I know how hard it is to walk on nerve-sensitive feet and feel bad for all of you who are experiencing that.

I'm trying to walk more to get some exercise and assuming I'll go back to the gym when I'm done with chemo and my immune system is stronger. Boy, neuropathy would sure mess up those efforts. Worry, worry, worry.......

--Bev

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When I reported neuropathy to my chemo nurse during the carbo/taxol treatment she recommended glutamine taken for 3 - 5 days beginning with the day of the infusion. I also took B vitamins and a few months later added acupuncture to my supportive modalities.

After 18 months of taxol I felt like I was walking on wooden blocks instead of feet and I fell easily but I am fine now, 3 years after the last infusion.

I don't like taking prescription meds because of the side effects but I do believe in supporting my body through the assault of chemo.

Blessings,
Martha

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Greetings!
I completed IP cisplatin/taxol 3/08 and began to develop neuropathy about 3 weeks later, progressively getting worse for the next 3 months. It started with numb toes and fingertips and eventually progressed to a spinal cord version of neuropathy called Lhermitte's. This happens very rarely, apparently. When I bent my head down, electrical sensations went down my legs and when my arms were outstretched, I had the electrical sensations down my arms. I started on some medications (gabapentin and nortriptyline). The gabapentin helped the "zingers", but the nortriptyline worked better on the more typical neuropathy foot pain to the balls of my feet. I hate to take medication, but for these I am really grateful.
My "zingers" were gone by mid summer. My toes are still a bit numb and my feet hurt a bit. I have been able to greatly reduce my medication, but still need a little to function. I also did accupuncture, massage, biotin and other B vitamins. The other thing I did later on and seemed to help is Tumeric.
I am an occupational therapist, and have learned much from my diabetic patients with neuropathy on footwear: non-binding or diabetic socks, extra cushioned non-binding and perhaps slightly oversized footwear. I tried on no less than 30 pairs of shoes to find ones that would work!
Now I am having a recurrence and will be starting chemo soon, hoping the neuropathy won't be so bad this time. I have always said to my doctors, I'm thankful for the treatment dispite the neuropathy, just so I'm around to complain about it!

Take care, ladies,
Stacy

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I found wonders in going to phyical theapy. They used ultrasound to my feet and it has helped tremendously!!! Crazy but true..My PT told me that they use this method on lots of athletes. However I have stopped PT due to my crazy schedule and the neuropathy comes and goes when I excercise on my elipictle. But please do try the PT for ultrasound..amazing results!!!!!!!!!!!

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Stacy,
I also had the sensation you discribed. But it was very mild tooks weeks for me to figure out that the increase in tingling came from bending my neck.
Did you have an MRI? I did and was told I have cervical spondylosis and stenosis(arthritis in the neck) The neurosurgeon I saw wanted to do surgery. I said not now.
I did accupuncture/massage and no longer have that sensation but I still worry about my neck. The numbness in my feet was better but it is bothering me more lately. I would like to know more about what your Drs said about this condition.

Debbie

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