Being Informed
For Vilma Aleida, neuropathy was a surprise.
“Neuropathy appeared in 2011 during my 7th chemo….That 7th chemo was the infusion of two treatments (taxotere and trastuzumab). The result send me to the ER, the pain was only relieved with morphine. After that, I have been living with neuropathy in my legs, from my knees down. I wasn’t aware of this as a possible side effect. It was explained to me what it was after that ER incident, and that it was due to the high toxicity of the treatment. It was also explained that doing this procedure was for my type of cancer.”
As of December 2012, it’s been estimated that almost 32.5 million people worldwide are five year survivors of cancer. Of those, around 13.7 million live in the US.
What is their experience as survivors? One part of many survivors experience is chemotherapy-induced peripheral neuropathy.
Neuropathy: What is it?
Up to 40% of cancer survivors have peripheral neuropathy. What is peripheral neuropathy? According to the Mayo Clinic,
“Peripheral neuropathy, a result of nerve damage, often causes weakness, numbness and pain, usually in your hands and feet, but it may also occur in other areas of your body.”
Nerves and Chemotherapy
Chemotherapy treatments can cause nerve damage. The nerve damage is mainly in the sensory nerves which are the nerves involved in touch, balance and how we experience ourselves in space. The chemotherapy agents that are most likely to cause neuropathy include platinum compounds (cisplatin, carboplatin, oxaliplatin), taxanes (paclitaxel, docetaxel), vinca alkaloids (vincristine, vinblastine), thalidomide, and bortezomib.
Usually nerve endings in the hands and feet are affected. Symptoms may include a sensation of “pins and needles,” numbness or pain and impaired coordination (also known as sensory ataxia). A patient’s quality of life can be impaired.
For Michigan breast cancer blogger, Nancy Stordahl, neuropathy is something she just lives with.
“I have a mild case of neuropathy in my feet. I noticed it at some point following my Taxol chemotherapy treatment. I do not remember this potential side effect being discussed with me before I started chemo, but I do remember receiving a handout listing the various side effects that could happen. Neuropathy may have been on the list, but it was not discussed. I also did not receive any kind of instructions on how to prevent it. I’m not sure this is possible anyway. Is it? My doctor did not change or reduce my dosage to lessen my odds of developing neuropathy. In fact, I remember him specifically saying we were using the highest dose that we could to go after my cancer as aggressively as possible. I remember that because it did sound rather scary.”
But Vilma’s case is more severe. Vilma lives in northern Mexico and she is fortunate that Mexico provides free breast cancer treatments 
to all with the diagnosis.
“it was very bad, my legs felt heavy, painful, …I felt like having big legs…[like] an elephant, but after couple of months of taking medicine it got better.”
Diagnosed the day after she turned 40, Vilma suffered a recurrence of breast cancer in November 2013.
“Now I am back in chemo and things got worst probably because of more toxicity. After [a] couple of days of the infusion, my legs start having, like electrical spasms, and the pain! Have to double the medicine doses during those days (gabapentin/tramadol). Guess I don’t have a single word to describe how severe it is.”
The damage can be less serious, as Nancy explains.
“I am “lucky,” I guess because my neuropathy has not really affected my way of life too much. I do have the constant numbness in the balls of my feet to remind me, but my walking etc has not been affected thus far. I hope it does not worsen. I’ve been told it shouldn’t, but… time will tell. I did have to go off Arimidex and switch to Aromasin because my foot pain definitely worsened while on the Arimidex, to the point where the Arimidex was no longer tolerable. Since the switch, my foot discomfort/numbness has gone back to the original level, if that makes sense.”
Barriers to Clinical Trials to Treat Neuropathy
There is no universal measurement tool that everyone uses to describe the severity of neuropathy. Lack of a tool like this is a real barrier to developing good clinical trials to find ways to protect the nervous system from chemotherapy.
An important component of such a tool would the patient’s input, as clinicians’ assessments of debilitation and quality of life, underestimate the severity of the experience. For example, in one study, 19% of patients reported neuropathic symptoms and over half felt these were moderate to severe, yet with this same group of patients, clinicians stated that only 12% had neuropathy and that 90% had mild symptoms. Another study reported patients identifying the beginning of neuropathy two months earlier than physicians reported its onset.
Today’s Treatments for Chemotherapy Induced Neuropathy
Chemotherapy is often interrupted or modified when neuropathy occurs. Vilma states,
I didn’t know it could be a side effect, although a lot of side effects were explained regarding what to do at home, to eat or how to eat it, the changes in my skin, nails, among others, neuropathy wasn’t mention[ed]. The doctor decided not to give me the last chemo, eight was the number after surgery and he explained that one last chemo was going to affect me more….
There has been some research on ways to prevent chemotherapy induced neuropathy including using Vitamin E to protect the nerves. A list of research on other strategies that have been tested, including calcium/magnesium infusions is available here. More research is needed.
Coping With Neuropathy
Coping with neuropathy can mean continuous pain medications. Some believe that as many as 58% of patients have long lasting problems with neuropathy. Neuropathy has also been implicated in increasing the risk of falls by 20%.
Medications like steroids, lidoderm patches, anti-epileptics, anti-depressants and opiates like morphine are used to treat neuropathy. Physical and occupational therapy are also used. Vilma `recommends several strategies to cope with neuropathy.
When feeling those electrical spasms lately I have learned that the more warmly clothed my legs are [the] better, I even have an oil massage and [that] helps a lot. When not having those spasms I try physical activity like walking for 20 minutes,… or perhaps a bike ride….
She has also turned to alternative therapies.
I highly recommend acupuncture. When looking for alternative solutions on the
Web I read about it at MD Anderson Cancer…, Integrative Medicine Center. I wasn’t sure because of the “more needles”![issue] I guess meeting with a high profile physician with an acupuncture degree [from] Beijing University during a meditation session change[d] that. At the moment I go after chemo and sometimes it helps one session but if the electrical spasms are bad then two sessions. When not having chemo, during my remission period, I had one session every three weeks. Besides the 20 minute walks, I encourage anyone with this issue to try it.
Nancy advises patient to be engaged and empowered through research on the drugs they will be getting.
My advice for someone about to begin chemotherapy would be to do some research about the drugs you will be receiving and the potential side effects. Look into it carefully, gather information and then discuss things thoroughly with your doctor. The side effects should not be brushed aside and you have a right to be fully informed before starting. Yes, of course, the primary goal is to kill the cancer, but the side effects (all of them) can be serious and need to be addressed. A patient needs to be aware of them beforehand.
She also advises,
If you do develop neuropathy, tell your doctors and seek help in managing this and any other side effects you may have. As I always say, never suffer in silence.
Patient-Initiated Research
According to The Neuropathy Association, neuropathy, (including that caused by diabetes) is at “epidemic proportions in the U.S. and abroad.” One strategy they are trying, is creating a registry of patients who are willing to be part of research on neuropathy. This patient-initiated effort is one way to provide ready-to-study groups to researchers. With this initiative, they are trying to increase funding for and interest in research of neuropathy.
For more information on this initiative or on neuropathy and chemotherapy, sign up for the May 21, 2014 Web Meeting or join Dr. Susan Love on the Neuropathy Association Facebook page on June 18, 2014, for a chat focusing on neuropathy and breast cancer treatment.
my partner and I researched what treatments she would receive, and their side effects. she is a musician and was concerned about CIPN which might prevent her from playing the guitar. Her oncologist suggested Taxotere rather than Taxol, to slightly increase the chances of neuropathy reversing itself and not becoming permanent. At three years after treatment the neuropathy was still severe (affecting her whole body, but especially hands and feet.) She was offered participation in a clinical trial of Tetrodotoxin injections. It changed her life. Two subcutaneous injections a day for four days. The pain and buzzing is gone for six to ten weeks at a time. Before these injections she hadn’t slept through the night for three years because of the pain. She was unable to play the guitar for more than ten minutes, due to the pain, buzzing and cramping in her hands. I am surprised not to see the use of Tetrodotoxin (Pufferfish toxin) mentioned in articles or discussions about chemo induced peripheral neuropathy, and I think it’s about time to get the word out. There is hope! There is relief! Three different routes to go: http://www.researchmatch.org or http://www.nih.org or http://www.clinicaltrials.org Then search CIPN and look for the trial of tetrodotoxin.
Thank you so much for sharing this!
Hi Jude – This is the only post I have come across where someone else has whole body neuropathic pain from chemo like me. Is there some way that I can private message you? I am at my wits end trying to deal with the pain. I want to find out more. Thanks!
Stacie,
Email me at joodonym@gmail.com
Jude
Hi Stacey. I have full body neuropathy from chemo. As uncomfortable as it is I am thankful that mine is not painful. I have numbness, tingling, stiffness, balance issue but very little if any pain. I am on a protocol of natural treatments and have been for three years. I’ve changed my diet completely and do acupunute, massage, chiropractor, naturopath, osteopath and naturopath treatments on a regular basis. Drop me a line if you’d like to chat. I haven’t come across anyone who suffers from full body neuropathy either.
Have full body CIPN. Chemo & radiation 20 years ago. Extreme fatigue. Movement and standing lasts for 2 minutes and have to sit. Recover and go again. 5 min task takes all day. I cope
Have you tried r-lipoic acid? I use it daily. When I don’t, the neuropathy can get quite painful. When I take it regularly, the neuropathy is manageable. Just a thought.
I use it daily to for neuropathy pain in hands and feet and it helps a lot. From what I understand, 600mg is the regular dosage but I still had pain, once I doubled it to 1200mg, I rarely get neuropathic pain.
Again, thank you for sharing this with our readers!
Naturopathy is an ideal way to get treated from various deadly ailments in a safe and natural way
I have CIPN from Oxilaplatin (sp?) which is mostly “Socks & Gloves” area, but seems to be slowly spreading. It’s bad enough to resist walking & balance but I’ve accepted that I have to live with it.
Tried massage therapy which felt good, but didn’t help.
Also tried a cold laser treatment called Realief (combo word of real + relief). Cost $3500, but didn’t help. Turns out it seems effective for diabetic induced neuropathy. Wish I knew that beforehand.
Naturopathic cures seem useless. Didn’t try acupuncture – which seems to help people with severe CIPN.
I had veinous chemo about 3-1/2 years ago and oral about 3 yrs ago for colon cancer. I’m 66, male, otherwise in good health.
That’s my comment, for what it’s worth….
Thank you so much for commenting and sharing your journey with neuropathy. My belief is that your comment will stir more sharing and possible ideas to help with this debilitating side effect of chemo. ~Kathleen
tlh, see my comment above. tetrodotoxin works well for cipn. neuropathy from platins and taxanes can be particularly bad.
I had 12 weeks of double dose taxol in the fall of 2011. Neuropathy started about 3 weeks into treatment. Then I was later diagnosed with Diabetes 2, suspected to be caused by the steroids used in the first 2 months of treatment (adriamycin/cytoxan). Until a year ago, symptoms were experienced in my feet : soles completely numb and tightness in ankles which has caused many falls. Last year cipn moved to my hands first as tingling and then more recently as real pain. I started warm laser treatment with Realief last week and started noticing positive changes after my first 2 treatments – some feeling bottom of arches. Then experience bad pain in my finger tips 2 days later and bad pain in my toes a day after that. I was tested yesterday and the neuropathy has retreated from my arms to the hand area only and from the groin to mid calf. Maybe I have a combination of CIPN and diabetic neuropathy: I don’t know, but the treatment is working so far. The Realife Center that treats me STOPS treatment if you have no response by the 3rd visit. Sorry you went the whole route without any improvement.
Thank you for sharing your experience and trying to help others with the experience of neuropathy. Kathleen
Thx for information, it was helpful to ask right questions to doctor.
I am taking pergabalin 75mg and thalix 50mg and vitamin tab should be taken.
Thanks again.
I took arimidex for 2 months following 16 radiation treatments following lumpectomy for stage 2 breast cancer. I had an infection so was taken off arimidex. Thankfully. I started having tingling sensations in the bottom of my feet and pain in balls of feet when standing too long. Feels better honestly to keep moving! I am just a week now on gabapentin so hasn’t helped yet. I am so anxious about this I can barely function! Is it likely this can goaway after time, or is this forever???
This is an important question for your physician. Please be sure to ask this and thank you for reading! Best, Kathleen
You can tell if your neuropathy is going away if it is moving down and if your sensation is changing as time goes on; for example in the beginning I had the ” glove and boot” sensation on my hands and feet, two years later it is in the tips of my fingers and just in my toes mainly in the middle three toes
I have completed #2 carbo/taxel treatment of 6 and just started with numbness, needle like pain in my finger tips and toes plus foot pads. Will be consulting with my oncologist before proceeding to #3. My question is has anyone tried MicroVas?
Diagnosed with metastatic breast cancer 9 months ago & having trouble finding the chemo that will work. Neuropathy was mild until I started Doxil. Has anyone experienced the feeling of having your feet in “sand” all the time? Anything that touches my skin feels rough and gritty, all the time! Especially hands and feet… I just started gabapentin, any suggestions are welcome.
I did Microvas for 6 months aggressively 3-4 times a week along with acupuncture . I think it helped mentally more than physically. It did help lessen the toe cramps but not much else , I take PoDiapin vitamin supplement and have recently started taking neurontin. That has been the only thing to lessen the pain, it’s not gone and I still have bad days but much better with the neurontin.
I finished taxol September 22, 2016. I almost did not complete the 12 rounds..my feet and hands were numb at 11. I wish I would have. I was diagnosed with triple positive bc stage one with a lumpectomy. I finished radiation in December and am on Herceptin until July. Neuropathy in my feet and hands is very bad, to the point that I am becoming pretty depressed. Is Arimidix prolonging this neuropathy or making it worse? I am 70 years old (find that hard to believe as well) and my quality of life has been severely affected. I am taking the appropriate vitamins. I just don’t know where to turn. I saw a neurologist and he told me if it was not gone by September I would probably always have it. I am getting so very depressed over this. Thanks for your help.
Don’t despair…. For some it takes years read my post by Tracy, it will take years to go away possibly 3-4 years. I know how you feel, I went through some depression because of this, like I said in my previous post mines started in 2015 after treatment, I then had the “glove and boot” sensation.After 2 years it is just in my fingertips and toes, it feels really weird being just in my toes! Almost comical like someone is holding just my toes! I am so glad it is lessening! It is also the type of condition that seems worse when you focus on it, if you keep busy you almost don’t feel it or it is not as bad! Keep busy, don’t think about it
I have such severe pain throughout my legs and spreads to my arms and shoulders from carbo/taxol for stagev4 ovarian cancer. I am on opioids and nothing else helps. My pain management is going to take me off of them. I’m terrified. I have been on these for almost 2years. What am I going to do for such unbareable pain.
Levorphanol it’s not what I want to take because it puts me into a stupor. Anywho, this drug does take the pain away along with back pain to. I have tried psych pills, all opiates and this is a form of an opiate. It’s an old Drug. Laura Breast cancer in 2007 chemo Taxotere Carboplatin Herceptin. Now in 2017 I have CIPN down both legs and now up my arms ,my back and I have lost my gallbladder. Very rare they say that CIPN effect organs they tell me. But it’s not of the table as I read in medical journals. Sad thing is I was stage 1 no lymph node involvement but the drs. Said I needed to be treated aggressively with stage 4 chemo because I was her2 positive. Life. Oh well. For all the other women that read this. I was also told the chemo would effect my ovaries so I tried to do the Lupron shot , bad side effects , looked into egg harvesting. Cost to much so I said I was content with the two teenagers I had. They did want to remove my ovaries too after my double mastectomy and I said no. I was through being cut on and tired of being in that hospital. Fast forward to 2011. I go to my dr. Because I am really sick again, this is just my family dr. And it felt like menopause (cancer had thrown me into it briefly) he said no Laura your pregnant. He said that is really rare for someone at your age and with all the chemo, so I go for scans. Sure enough. And I cry for 6 months 42 with CIPN and have a granddaughter on the way. So me and the child’s father don’t have time to spend together due to the new baby and all so the one time that we did a month later I was like wth?? So..Annas date of arrival was 2-14-12 Lily’s was 2-13-13. Summary: I have a crippling disease that chemo gave me.. and I am amazed how these two perfect little girls came out unharmed. So young or older.. anything is possible.. just because they say you can’t.. you just might.
Yes! Remain optimistic! Try to keep occupied when you are having pain or discomfort, watch a good movie, call your bestie to go shopping, etc!! Watch inspirational TV like Pastor Stanley who really helped minister to me during difficult times!
A word of caution about anecdotal reports. These should not be a substitute for outcomes from prospectively defined studies. With testimonials you don’t know who is reporting it. You can’t know if it’s a true or false account? Degree of benefit? How long it lasted? With such there is no denominator … thus, no rate of benefit: what others can expect.
You are absolutely correct. Our blog provides stories but Medivizor.com provides recent medical journal articles on peripheral neuropathy as well as many other conditions. Here are a few links to recent medical journal article summaries on peripheral neuropathy:
Lifestyle factors affecting chemotherapy-induced peripheral neuropathy
Peripheral neuropathy as a result of chemotherapy
Mirogabalin: a potential new drug to treat pain in diabetics with peripheral neuropathy
Chemotherapy-induced peripheral neuropathy
For more summaries of medical journal articles, you can input your query into the search engine on the right-hand side of the blogpost page.
or for personalized summaries of medical journal articles sent to your inbox, please sign up for Medivizor.com
I had 4 rounds of paxlitaxol. My last chemo was 1 year ago and I have had no significant improvement for the neuropathy in my hands and feet. My hands are not disabled just painful. I have stopped taking gabapentin and my coordination has significantly improved. There has been no change to the pain. I have discovered that walking 30 to 60 minutes at a time actually feels good. It doesn’t diminish the pain but seems to massage my feet. Standing for any length of time is unbearable. I have totally given up on any kind of pain medication except T3s before bed, otherwise I cannot sleep. It usually works. I have been hoping that this is only temporary but apparently not. My only solution has been to keep as busy as possible to keep from thinking about it. Thank you for an opportunity to vent.
Cycle 15 of taxotere for PCa I developed pins and needles in extremities. Not painful, but very tingly when walking, etc. Read an article from university of Iowa healthcare February 2017 about how the use of nicotinamide ribosome form of vitamin B3 can prevent or reverse nerve damage from taxotere. Ordered this B3 form from Jarrow through Amazon and the symptoms went away by cycle 16, and have not returned through cycle 17 (current as of June 2017). I take two 100mg tablets morn and evening during first week and one tablet daily during weeks two and three of cycle. Not sure what optimal dosing should be, but this works for me. Now, if I could only find something for the fairly extreme fatigue I have from taxotere/Lupron combo!
Hi all.
I went through a Folfox protocol of 12 sessions of chemo with oxyloplatin and hile i did get the tingling side-effect in the fingers (and broke a few bowls and glasses), the tongue and the chin, but it usually lasted for three or four days, and came back after each session. This has disappeared after the end of the six months protocol. However, a couple of weeks after the end of treatment, i started to feel numbness in the toes and upper part of the feet. This is not permanent, does not provoke any pain, but it also goes with a certain sullenness of the feet, which makes it uncomfortable to walk in tighter shoes. My surgeon (colon cancer stage 3, full remission) says it’s unavoidable and that there’s nothing to do, if really unpleasant a bit of hydro might help, but as it doesn’t really prevent me from walking, running or playing squash, i guess i’ll just need to see how long before it too goes away. I might try acupuncture. Good luck to all. Pierre. More on my journey at dybmapi.livejournal.com for those interested.
10 rounds of Folfox w Oxiplatin.
I had some serious stranger side effects during my treatment but no problems with my feet. Those side effects started when my treatment ended and continue to get worse. The pain is severe and worse the more I walk. When it is very bad I start to get weakness up my legs. I’m having some balance issues. They hurt all the time , shoes hurt more but barefoot is impossible.
Any other suggestions ? And can it keep getting worse?
Hi Maria.
As you may have seen, i had 12 rounds of Folfox, and i started to feel strange things in my feet’s toes and the lower part of both feet. But nothing on the legs, i am not prevented from practising sports, or walking. Must confess the right foot is a bit swollen, and i can’t rally feel comfortable in some of my shoes. I talked to my surgeon and he says that some manual therapy could help, if it gets too bad, and i am also tempted to try acupuncture, as the issue here is with nerve terminations. Just a couple of ideas for you, as you seem to have bigger issues than me. Normally this should reduce over the months, and any activity that drains the body from leftover chemicals should help: spa, massage, drinking a lot of water etc.
My husband Marc 61 recently completed chemo and radiation treatments for stage 4 adenocarcenoma lung cancer which had spread to the brain. The brain tumors were surgically removed and radiated. He was also treated with Taxol and Carbo. During treatment he felt numbness in his toes, we had mentioned it to his Dr. but was just brushed aside. Now 4 weeks after treatment, he all of a sudden lost feeling in his left leg and now in the arm. Fortunately he has no pain, but is now crippled. Are there and natural foods that can help reverse this nerve damage? We are desperate.
All the above information is true. Cancer patient will be benefited by this useful article. Thanks a lot!!!
I ended up. With Parkinson’s after cipn I have read articles. About using a cold cap on your head and ice packs on your hands and feet during chemo can help, are doctors using these yet.? Seems to me they need to better informing patients be for chemo I would have tried this.
Sadly my boyfriend suffers tremendously with neuropathy pain. He has several health issues, blood clots after emergency appendectomy, bypass in left leg, clot filter in chest, venous insufficiency, venous stasis ulcer non healing and a gene mutation that makes him deficient in B12, B6 and folic acid. He has been on warfarin since 2009. In 2012 he went to MD Anderson for further testing to see if he has POLYCYTHEMIA VERA. After all the tests labs and bone marrow biopsy, the doctor suggested 500 mg of Hydroxyurea a day because he is a high risk thrombosis patient and the test confirmed Polycythemia Vera diagnosis. Recently he moved to Austin, changed doctors and all labs were redone. That’s how we found out about the MTHFR mutation. The doctor requested we get his records from MD Anderson. I logged into his portal and began scanning his reports. The bone marrow biopsy in his chart is for a woman XX/46 diploid female!!!! What?? I continue the doctor called on 1/10/13 at 10:44 am to relay diagnosis confirmation and medication recommendation. At 12:25 pm 1/10/13 an addendum was posted stating no molecular support for diagnosis. No one called no one said anything. Chemo began 1/16/13 at 1000mg a day. He just got off the chemo in 2017. He is on so much pain daily it’s unreal. He should have never been on that drug with venous insufficiency and to top it off he didn’t need it!!! Repeat bone marrow biopsy completely normal. Now he is in constant agony due to the chemo causing him to have neuropathy!!
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My Oncologist and Neurologist do not want to acknowledge that my AC/Taxol chemotherapy exacerbated my carpal tunnel. The Neurologist said it could have just irritated the small nerves. I keep on telling them that I never had numbness, burning, tingling, stinging in my fingers, hands, and arm on the right side and my left toes are numb before the chemo. Why do they not want to acknowledge that the chemo is the cause of my side effects even though I have carpal tunnel?