Neuropathy in hands and feet.

Hi Teresa59 Sorry to hear your having so much pain and discomfort, may I ask which medication you were offered ?  I am currently taking Gabapentin and this has helped I am prescribed 300mg ( one tablet 3 x a day but find 2 is sufficient for me at present. )  Fortunately I have not had any side effects this time round, first time I had it , it knocked me out but that was quite soon after chemo so was tired to start with. Now 6 months on It comes and goes but When it was really bad I used to put my feet on a covered Hot water bottle and found this took the edge off it, and sometimes I warm foot spa .I hope you find some comfort soon. Take Care x

Thank you for replying nannyjanet. I was given gabapentin and it totally knocked me out I was like a zombie, I couldn’t drive which I need to in my work. I have now been given pregabalin but reading the side effects they are the same as the gabapentin so I haven’t taken them. Unfortunately I believe the damage done by the potaxcel is permanent as I had 12 weekly doses.  When ever I spoke to the nurses or consultants about my hands and feet all they kept saying was can you do your buttons up. Not once did anyone tell me this was a side effect of the treatment and they could have and should have reduced the dose. I am sorry I shouldn't  sound so ungrateful because the chemo has got rid of the tumour, I’m on 3wkly phesgo injections and I’m taking Letrozole they all add to the side effects and I’m just in so much pain it’s really getting me down. I was so unprepared for all these side effects. Sorry for the rant, I am determined to beat this horrid decease just need to get the pain managed and get my mojo back…

I understand exactly where your coming from, I was due to have 3 rounds of chemo as' a mop up' ( I had Serous Endometrial Cancer my chemo was 6th September) 21 ) But my symptoms started 2 days after my first dose of Paclitaxel/Carboplatin It took a few weeks to ease off and was due my 2nd round but still felt dreadful so it was postponed .To be fair My Oncologist did say the dose could be reduced, but also said as I was caught early and surgery went well she thought the negatives far outweighed the benefits in my case and we both decided to stop the treatment...It was a big decision but felt it was right for for me at the time. the Neuropathy came back in February and is still troubling me now but thankfully it is manageable. The Gabapentin completely wiped me out too first time round but I had took 3 that day....never again. fortunately I was off work then and have since retired..I really wish you well and hope things get better soon. ..Onwards and Upwards...good luck x

Hi Teresa59

I’m so sorry to hear about the severe pain in your feet.  I totally understand how depressing this can be having been through the same myself. Not being able to walk was by far the most down I’d felt during my treatment but I’m pleased to say that once I saw the hospital pain team, they were able to help me.  There was another thread recently with a similar topic which you can find here with the things that I tried before finding something that worked.  I hope this helps but please feel free to ask if you’d like any more information. Wishing you all the best.

Loffie x

Edited to add: With regard to shoes and socks, I bought some toeless socks from Mysocks website and some RAB down slippers for around the house and that really helped with not having to wear anything tight which accentuated the burning sensation.  I was originally walking around barefoot but that was too cold in the winter!  For outside, I wear running shoes most of the time as they have a mesh upper and are not so constricting.

Good morning Teresa59

I am sorry to read you are having neuropathy problems after chemo. It is disappointing that noone took you seriously during the taxotere and reduced the dose. My own problems were caused because I didn't mention it and by the time I couldn't walk, the damage had been done. However, I have had plenty of aftercare and explanations since. I'm not sure if you have been told that the Gabapentin is not just a pain killer but helps with nerve damage. It has to be started in small quantities and increased. At one time I had built up to 400mg but gradually over time I am now managing things with 200mg. Yes, at the start it did make me drowsy and nauseous but once it was in the system, that effect went. I had started with the low dose increasing over quite a long period though so at the start I was drowsy with little obvious benefit. My advice would be persevere.I am allowed up to 500mg a day but felt I needed to keep something in reserve for the future....just in case. Have you had blood tests to determine your B vitamin levels? B12 is vital for nerve damage. I think my regular B1, B6 and B12 prescription contributed to the reduction of the gabapentin. I see the neurologist every four months. He regularly tests the nerve activity and discovered that the nerves in my feet were permanently destroyed. Some of my leg pain was attributed to decompression at the base of the spine. Chemo had accelerated the deterioration but a neuro surgeon corrected that. It took a while ( probably 2 years) but that pain has gone now. I was advised to use a bed cage for the sheets as when my feet are burning, material feels like lead. Have you tried one?. Also I often walk around the house bare foot but we have tiles not carpets which are of course cool.

I hope you continue to get the correct help. Insist you see the correct doctors.....unless you are tested by a neurologist, people are just guessing at the damage. Sometimes the problems can correct themselves but this is usually during the six months after the chemo finishes, I was told. Anything longer needs proper checking.

In the end I didn't have the final taxotere. I couldn't walk and had very little skin on my feet and hands at that point. It took several weeks before I could walk normally after it stopped.

However, my cancer was diagnosed in 2015. Despite stopping chemo early, my annual mammograms are clear. I hope this helps alleviate any concerns if you had to stop yours.

Take care all. Hopefully you will all get the correct follow up you need.