Have you found a way to cure/improve your peripheral neuropathy?

[Meridian14]

Hello ladies,

I previously posted a message asking about foot massagers or foot spas - best ones to use?

I see that some people have also mentioned that acupuncture helped to relieve the pain and others have said that acupuncture did not work for them. Others have said Vitamin B/B12.

I do use cream and oil on my feet regularly and try and massage my feet as often as i can.

I'm currently taking 150mg of Pregabalin. I have been told by the Oncologist that it can take a while to start working. I started on 50mg a few weeks ago and i've slowly built up to 150mg.

Those of you taking pregabalin or gabapentin, is it working for you? what dose are you taking? (i know everyone is different) and how long before it started to work.

Is anyone using anything different/doing anything different to help their PN that is working well for you?

I would really appreciate any advice on this.

Best wishes

Lisa.

[Caleda4]

Hello there,

I have never taken anything for peripheral neuropathy and i have had it now 7 years now. It did subside somewhat, since i have just finished carbo caelyx about four weeks ago it appears worse. I only have it in my feet,but this time of year in bed it often wakes me up with my toes burning. I hope that someone replies with helpful info.x

[Meridian14 in reply to Caleda4]

Hi, Oh gosh, i'm sorry to hear this. 7 years is a long time to suffer with it. I hope this current worsening subsides very soon for you. I hope that some of the responses on here might be of help to you too .

Best Wishes

Lisa

[Lovedogs41]

I take a good quality high strength cbd oil several times a day (you can’t overdose on it ) which I think helps.I get mine online from cbd brothers,excellent quality.

[Meridian14 in reply to Lovedogs41]

Thank you for your response... I will have a look at this and maybe give it a try. Glad that it's helping you.

Best wishes

Lisa

[Guilane]

Hi Meridian, I had been suffering from neuropathy in my feet before I was diagnosed with OC so had learned to live with it. However, it did get worse, what used to be just intermittent tingly toes has now developed into tingly socks 24 hours. I’ve never been offered any medication and have been scared to ask in case my Onc takes me off my cancer meds. I tried reflexology through the My Cancer/My Choices. It did seem to help and I really enjoyed it. You are allowed six sessions for a donation and I would have carried on but that’s the maximum. Definitely worth a try though. I have a foot massager (RENPHO) which seems like a good one but I don’t use it often enough to know if it really makes a different. I hope this helps. Gill X

[Meridian14 in reply to Guilane]

Hi Gill, thank you so much for your response. I will look into the My Cancer/My choices and see if i can get some reflexology sessions. This is good to hear that you think that it helped you. Mine is also 24hrs it's not intermittent though usually in the mornings is not as painful as the evenings. I will look into the RENPHO as well, i'll take a look at the reviews.

I hope your neuropathy subsides. I understand about you not wanting to mention it to your Onc. In my experience the Onc will not stop my treatment unless my neuropathy is very very bad.. they stage it in levels. I'm not sure what stage it goes up to but they asked if i was falling over, which i'm not. I have the pins and needles constantly and the burning if i walk on carpet in bare feet and burning mainly from early evening. I'm now on 250mg of pregabalin.. i think it is helping a little as the shooting pains have pretty much stopped. Hope this helps

Best wishes

Lisa x

[Supermary]

if your still going for Chemo

And your not icing already

I suggest you ice your feet a little before ,during your treatment, and and little after so it doesn’t get worse

[Meridian14 in reply to Supermary]

Thank you for your response, Supermary. Is this something you have done and found it to work?

I do have ice blocks and cool pouches so maybe i'll try this. Thank you.

Best wishes

Lisa

[Supermary in reply to Meridian14]

yes 100% at least for me

I still work full time, wear my heels ;), and try to learn how to play golf lol .. so it’s working so far

I iced from the beginning of my diagnosis

No neropathy

Since you are sitting there already I suggest just do it nothing to loose all to gain

At MSK I ask for ice for my feet and hands they bring me little baggies with ice ti slip over for both

I put socks ( cut off toes) on my feet then the ice baggie

I put knit gloves on my hands cut off fingertips then the ice baggie

I slip my hands and feet in about 20 minutes prior , leave on during and leave on about 15 min after

I also cold cap ( separate discussion if interested)

diagnosed stage 4 6/16/20 55yrs

I have endometrial HER2 + cancer aggressive

I had 6 rounds of carbo platin Taxol in 2020 each round a 3.5hr drip declared NED jan 2021

Recurred end of April 2021

started ENHERTU June 2021

And I am on my 20 th round of the drug ENHERTU. Which is a anti body chemo conjugate 30 minute drip every 3 weeks

hope this helps

Margaret

[OvacomeSupport Partner My Ovacome Team]

Hi there Lisa

Thank you for your posts about peripheral neuropathy. I was really sorry to hear that you have been experiencing such pain with this condition. I very much hope the advice from your clinical team and introduction of pregabalin will provide some relief for you soon.

I can see that several forum members have shared their experiences of peripheral neuropathy, which I hope has been helpful. I just wanted to let you know that Ovacome has an information booklet on this topic, including some suggestions about managing symptoms, which can be found here: ovacome.org.uk/peripheral-n... . I hope this may be useful. We can also send this to you in the post, free of charge, if you prefer?

Please don’t hesitate to get in touch if you would like to talk through anything with the Ovacome support team. You can reply to us through this forum, email us via [e-mail] or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to provide information resources, help with questions, or just have a friendly chat.

Best wishes

Annie – Ovacome support

[Meridian14 in reply to OvacomeSupport]

Thank you Annie. I have read the information in the link that you sent. Thank you for this. i will certainly try reflexology. I already do most of the other things, though i have not tried compression garments.

Best Wishes

Lisa.

[Saintgermain]

Hi, Sorry a bit late in replying I just ran across your post at one point prior to treatment I was taking Gabapentin for a lower back condition I had a bottle on hand so I took 300mg at night (also helps you sleep) had Carbo/Taxol and no neuropathy so I'm thinking it worked at keeping it at bay.