We are planning on including an article all about chemotherapy-induced peripheral neuropathy in the upcoming edition of the Ovacome magazine. The article will explain: what peripheral neuropathy is, how treatment for ovarian cancer can cause it, information about professionals who can advise, what can be done to help and what support is available. We will also be letting readers know about Ovacome’s information booklet on this subject which can be found here on our website: ovacome.org.uk/peripheral-n... .
We would really like to include some quotes about people’s direct experiences of chemotherapy-induced peripheral neuropathy. This may include how the condition affects day to day life and any ways you have treated or managed the symptoms.
If you would be happy for us to include a quote (we won't use any personal details, just the quote), please could you leave a comment below which we could add to the article? To view previous editions of the Ovacome magazine, please visit: ovacome.org.uk/ovacome-maga... . This page also provides the option to sign up to receive the magazine.
Please don't hesitate to send us a direct message or leave a comment if you have any questions or if there's anything we may be able to assist with.
Many thanks for all your help as always.
The Ovacome Team
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This article will be very useful for everyone who has neuropathy especially for me. I only experienced mild neuropathy previously on Plactitaxel and when the treatment stopped I was lucky the neuropathy disappeared. This time round with single weekly Taxel I'm feeling the neuropathy more.My feet are, at times painfully cold. There are no pins and needles just a numbness especially 2 toes on each foot. Some toenails have also discoloured. My hands are just colder than normal.
I'd love to read any tips to help bring my feet looking and feeling good again.
This will be useful information,as so many people suffer with this.I originally had neuropathy following chemo in 2016, I was fortunate enough to not have any further treatment until 2020,by which time the neuropathy had improved greatly. Last year I had further treatment and the neuropathy has been worse. I have never taken medication for this,by choice really. I do walk regularly and it has never stopped me doing the things I have wanted to do.
It does wake me up sometimes when my toes are burning.
There are now gel ice socks available now online,so next time I am very tempted to try this.
Really very useful, I experienced it after chemo, unfortunatly 8 months later it's not better (I'm on Avastin + Olaparib, waiting for the end of the first one). I plan my walks, not too far. If I don't use my legs it's OK 😕 I'll gladly read booklet , but Yours advices, my Ladies, too. Best regards from sofa 🤠
Firstly, thankyou so much for this and all the information and support the Ovacome team gives. I experienced peripheral neuropathy with the very first chemotherapy I had, Carboplatin and Paclitaxel. It was in my feet and toes and even now, nearly two years on, I still can’t completely feel my toes and they are always cold. My toe nails are also very fragile and break easily. I was on Niraparib for a year however experienced no change with regard to the neuropathy.
I have just stated a second round of C & P due to Niraparib not working and the disease having progressed. This time, wow!! But not in a good way. The pain from the peripheral neuropathy was excruciating. All through my legs and feet though not my arms and hands. I was extremely wobbly when walking. This however, last for about six to seven days then passed. It’s now back to just my toes.
My next round of chemo is this week. I now know what to expect. I’m grateful for the advice here and very grateful to be getting the treatment. Peripheral neuropathy and treatment versus no treatment? I’ll take the treatment every time and battle on through the neuropathy with the support here and from Ovacome.
I get itchy feet and hands. Sounds quite benign but it can be so overwhelming I could tear my skin off. Feet especially. I wear bedsocks at night and sheepskin bootie slippers around the house. I dry my feet first after a shower. Silk or cashmere gloves are great around the house in winter. I also get tinnitus which I notice most at night.
The neuropathy is unpleasant but if I knew then exactly how it would be, I think I'd still have the chemo.
This is a great topic for the magazine; I'I'm sure it'it'll be really helpful.
I experienced peripheral neuropathy on carboplatin/paclitaxol. My Oncologist had informed me about it and also that I should report it if it happened because it can be permanent. My dose was reduced and over 6 months the neuropathy lessened and finally went. I was worried about reducing the chemo dose, but it was successful.
Hi I suffered from Neuropathy when I first had Carbo/Taxol chemo in 2019.I had it in my feet & when walking it felt like I was walking on small pebbles all the time. As I am a big walker who finds walking is very good for my state of mind, it severely impacted my daily walks & I ended up only going for short walks instead. A friend of mine had given me a present of Nelsons Arnica cooling gel when I was diagnosed & I really found this helped relieve the Neuropathy. I am not sure if its available in the Uk but there are plenty of other cooling gels & especially ones that the athletes use are supposed to be very helpful. Thank you for highlighting this in your upcoming article
I developed mild neuropathy after first session of Paclitaxel and Carboplatin. I could feel the tip of my fingers and toes numb but it lasted a few days only.
As I progressed through treatment, these sensations would last longer and developed tinnitus after 4th cycle. The Oncologist reduced the dose 20% to ease the symptoms. The numbness disappeared but I still have tinnitus 16 months after finishing chemo.
Hi I experienced peripheral neuropathy half way through Carboplatin/paclitaxel 6 cycles in 2019. Numbness and slight pain towards the end my toes/fingers and nails discoloured.
Disappeared soon after treatment but left my right toe nail unable to grow normally, over time it became shell like , unable to cut and hard to file. I paid to have that nail removed. Have to say that nail had been stood on and not brilliant.
Back again on same chemo this year and more aware . The PN returned hands and feet again worse after 3 cycle. My right hand still slightly tingles but have had no discoloured nails. SCN recommended ordering ( from Amazon) Udderly smooth for my dry skin. I also told my oncologist and he reduced my last two cycles by 10%. This helped reduce my symptoms, which soon disappeared.
A good topic and awareness is important. So is all the great help, information and inspiration from everyone here. 😀
I had bad lazy legs symptom in my later chemo cycles and have a milder form to this day (1+ year later). It affects my sleep because I start to feel it the minute I hit the bed. Using cinnamon oil for massages and some specific yoga poses do help. Walking too. I always thought this was due to neuropathy but reading the above comments, my symptoms look different, so not sure now!
Hi Goodgirl98, I also suffer with what I think might be called restless leg syndrome. It is really a horrible feeling & I have to get up & walk around at night to try and ease it. Sometimes I take a paracetamol tablet (not sure if thats ok when on chemo but I am on Niraparib at the moment ) & find it helps. I also put a cushion under my feet in bed to elevate my legs & it can help too. I know several women around the same age as me who dont have cancer & suffer from this also. we all think it maybe linked to the menopause rather than chemo treatments. Maybe someone else or Ovacome can shed some light on this very uncomfortable symptom X
Thank you so much for your reply. I was really sorry to hear about your experience of restless legs syndrome. The possible association between restless leg syndrome and cancer continues to be explored, and there has been some research looking at restless legs syndrome as a cause of sleep disturbances in cancer patients receiving chemotherapy.
I wanted to share some information from the NHS about restless legs syndrome which can be found here: nhs.uk/conditions/restless-... - This explains more about symptoms, causes and potential treatments. In addition, Restless Legs Syndrome UK is a charity providing information and support for anyone affected by this condition. Their website is available through this link: rls-uk.org/ . Their website includes information about symptoms and diagnosis, medical and non medical treatments, and living with restless legs syndrome.
I hope this information is useful. Your oncologist, clinical nurse specialist or GP should also be able to provide personalised advice about restless legs syndrome. Please don't hesitate to get in touch with the Ovacome support team if there's anything you would like to talk through or any further information we can provide. We're here to support you Monday - Friday, 10 am - 5pm. You can reply to us directly through this forum, call us on 0800 008 7054 or email us via support@ovacome.org.uk.
Thank you Annie for sending me that link. I never thought to mention it to my team as I suffered with it before I was diagnosed & just thought it maybe connected to me having varicose veins & bad circulation or the menopause. I will mention it to them when I am in and maybe they can give me something to help. Many thanks again for your reply
A huge 'thank you' to everyone who took the time to share their experiences of chemotherapy-induced peripheral neuropathy with us. All your responses have been extremely insightful and we will certainly be including some of your quotes in our upcoming magazine article on this topic.
We often have feedback from our members that hearing the voices of those directly affected by ovarian cancer is of huge value and makes our content more meaningful; thank you for being so open in your replies.
We will be sure to post a link to the published magazine in due course.
I have been diagnosed with peripheral neuropathy in the form of proprioception in my legs by my oncologist. who says it is a side effect of Olaparib. Basically, my legs feel very heavy and I have difficulty controlling where they land when I walk, which means my gait is unsteady and I have to use a walking stick. Before taking carbo-taxol, and now 18 months on olaparib, I had no problems. Despite this, I make sure I walk for an hour every day and go up and down the stairs. There is no pain but it is a bit of an effort. And I do look drunk. I think this is a comparatively rare side effect, but there are some ladies on the website who also have had this symptom. One wrote to me in response to my post: "I am two months off Olaparib and my walking is much better." My oncologist also says it will improve when I come off Olaparib. The quandary for me is wanting to stay on Olaparib, possibly for longer than 2 years, to keep the cancer at bay or coming off it and having the joy of improved walking. But, perhaps my oncologist will insist I come off it after 2 years and then I won't have a quandary! Also, it is hard to find a physio who has experience of dealing with this.
I have been reading about a device called Charco Neurotech which is being used by the NHS. It is an electrical device effective in improving the gait of some Parkinson sufferers. I have put my name down on the waiting list to buy one but the company says nobody has used it for this condition. I don't mind being a guinea pig!
I was diagnosed with peripheral neuropathy in 2016 after my 3rd dose of chemotherapy. I was already on only 75% of the taxol, due to being in poor physical health, so my oncologist left it at that dose and only increased the Carboplatin to 100%.
Since then I’ve continued to experience balance problems with my feet, because unless I can see my feet, I don’t know where they are! My finger tips were also affected initially, but they have now improved significantly, apart from some clumsiness and lack of dexterity.
Between 2020 and 2022, I was part of a group comprised of clinicians and people experiencing peripheral neuropathy, working together in compiling a booklet on the subject intended for patients, accompanied by a short video, demonstrating how widely people’s individual experiences can differ. I found it to be a very worthwhile project and was fascinated by the range of patient’s experiences.
I hope these comments might be useful to others on the forum as well as to those writing the article.
Thank you all so much for sharing your experiences of chemotherapy induced peripheral neuropathy for the Ovacome magazine. I'm pleased to say that the magazine is now available on our website through this link: ovacome.org.uk/Handlers/Dow... . You can find the article about chemotherapy induced peripheral neuropathy on page 10 - 11 of 20 which was shaped by your comments here on the forum.
We hope you like the article. As always, the Ovacome support team are here for you so please don't hesitate to get in touch if there's anything we may be able to help with. You can send us a message here on the forum, email support@ovacome.org.uk or call our Freephone support line on 0800 008 7054. We're here Monday - Friday, 10am - 5pm.
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