Neuropathy

Hello, 

I was left with a similar problem after the Taxotere. I was told to give it about six months then if it was still causing difficulties I would be referred to a specialist. As I had a second complication with the sciatic nerve, I saw the neuro surgeon first and needed an operation but once that was finished I went to the neurologist.  He did the appropriate tests which showed permanent nerve damage in feet and hands. It's not good news but it does mean I know where I am. In addition he did a series of blood tests and discovered significant deficiences in B vitamins and zinc and vit D. I take daily vitamins now although  I do also take the gabapentine ....up to 500mg a day depending how I feel but I am certain their are other painkillers.....I find nowadays it flares up and then settles. I get a lot of numbness, icy feet and hands that have a burning sensation at the same time. The skin peels, again sometimes worse than others. I have regular check ups .....three or six monthly depending what he thinks.....and he regularly tests the nerve deterioration which in my case has progressed from my feet to lower leg. It's very slow and I don't have anything more serious as far as I have been told but it's reassuring to be checked.

My advice.....insist you see a neurologist and at the very least get your GP to take a blood test which shows vitamin deficiencies. Not sure with the vitamins if it's a ' chicken or egg first' scenario but I certainly have less problems now I take them. The B12 is probably the most significant which I take 10g every 10 days as a drink.

I hope your problems do sort themselves but if not over the next month or so, don't ignore them. Oncologists aren't good at accepting this side effect and you may need your GP to help you see the right people. 

Take care. Love Karen

Ah Karen. Thank you so much for your comprehensive reply - I can't tell you how amazing it feels to know that someone understands!  Whereas I wish you were not going through it, thank you for telling me what to do. I am soooo fed up. Could I ask one more question please.  Can you drive?  The lack of understanding about side effects is phenomenal but I guess we are still here which is what counts.

Maybe something will start to clear for you - I do hope so.

Again, many thanks and love back to you.  Sandra

I do drive but not when my feet are particularly bad. Luckily my hands are ok for driving and although they may hurt I try to do plenty of things which exercise fingers. I knit....sometimes only three rows then break and I colour online. Excellent finger coordination.

I thought of something else after I finished previously. Sheets in bed often feel like lead weights and I can't sleep but when I was in hospital for sciatic op a lovely old school nurse brought me a cage. It's brilliant. I bought one from a chemist for less than 5 €. I use it from time to time during particularly bed spells. 

Hope that helps. Chat when you like. P.m. if you prefer.

Hi ,

I am so sorry to hear that you are suffering with neuropathy. Going through all that treatment and having lingering invisible symptoms is very hard.

I don't usually write on this forum as my breast cancer was 10 years ago and treatments have moved on since but my heart goes out to anyone suffering from neuropathy following chemo.

I had neuropathy following Taxol chemo. I was told that it takes about 2 years for nerve damage to be repaired. It probably took about 3 years in my case. I still occasionally get shooting pains in my feet which last a second or two but otherwise I am happy to say that the neuropathy regressed slowly over a period of about 3 years. My hands are fully back to normal

What helped:

* taking a shower before going to bed and giving my feet a good scrub with the towel

* swimming

* gym - walking on my heels, walking on my toes, rotating my ankles, standing on one foot, anything related to balance, lifting small weights (two half litre plastic bottles filled with water for example)

* regular walks

I hope that time and patience brings you some relief too. 

Take care

Miranda

Dear 

I found Aqua aerobics really helped , I went to classes twice a week and still do . It’s been 3 years since I finished treatment . About a year  ago I took up knitting snd that helped too. 

You could be able to apply for ESA and PIP from DWP. 

I retired a year after my treatment finished 

I Also  enjoy reflexology , my therapist has done extra courses to be qualified to treat cancer patients. It’s a lovely treat . I also employed a foot specialist to cut my toe nails and to look after my feet . 

I still have peripheral neuropathy but manageable 

I kept up my driving . Just make sure you wear good supportive shoes . 

take care 

Ruby Rose i

Hi 

Very sorry to hear you’re suffering from neuropathy following your chemo.  I’m 16 months post my last Paclitaxel session and still suffer from numb/burning feet.  I’ve been lucky in that my hospital have a neuropathy clinic run by the pain team who are mostly anaesthetists so might be worth asking if there’s something similar in your area?

I didn’t want to take any further drugs so looked at topical treatments, some of which have been beneficial, some not.  However, I’ve found acupuncture has helped a lot, though make sure that if you’ve had lymph nodes removed that you don’t have any needles put in that arm.  The acupuncture helps the blood flow and produces chemicals which promote healing. 

I was told it could take up to 3 years for the nerves to repair so I’m afraid it could be a long haul.  I find hot summer days make the burning in my feet worse and for the winter, I purchased some toeless socks as wearing constricting clothing like normal socks made the pain worse.  I found some lovely down slippers and the toeless socks really kept the pain down.

Wishing all you fellow neuropathy sufferers all the best and fingers crossed you find something to relieve your symptoms.

Loffie x