Hand foot syndrome 12 weeks after finishing chemo.

Hi

My feet also seemed to suffer with the capecitabine although not as badly as yours. Mine feel like they are permanently sunburnt and the skin is too tight for my feet. They continued to get worse after stopping my chemo although the tingling that was starting in my fingers went away. Apparently it can take several months to improve however I am now 2 years post chemo so don’t think I’m going to see much improvement now.

I find that reflexology helps a bit and sleeping with my feet out of the covers. It may be worth seeing your doctor as there are tablets called Gabapentin I think that can help numb the nerve endings but I’ve heard people struggle with the side effects of these tablets also!

Sorry I’ve not been much help but hopefully someone else will be along with some top tips then we’ll both be happy bunnies

Take care

Karen x

I sleep with my feet out of the covers, but it's very hard to keep them cool during the day if I go out.   At home I have fans under the table and desk!   But going for a wander round a town or a walk on the seafront is impossible.   I feel exactly like you - sunburnt and skin too tight for my feet!  It's very painful at times.  The oncologist just says "they usually get better in a few months". But I don't like the word "usually".  We are going on a long arranged holiday next month to the South of France.  We planned to explore medieval towns and roman ruins but it is 36 degrees there. I guess I'll just stay in the hotel with my feet in the swimming pool!

Well Karen, no-one else replied!  I guess we are the unlucky ones whose feet do not heal.  I have arranged to see my oncologist next week but quite honestly I don't think they have any solutions.    I am getting so frustrated that I can't walk for more than about 10 minutes without my feet getting red, burning and painful. 

 Hi Sallyrango

Well, I am answering as I am well past my treatment which included Taxol the cause of the hand and feet neuropathies. 

All I can say at the moment is that I suffer a lot with this and yesterday was told by my oncologist that it won’t get any better. Not after all this time. I am a year out. 

Busy at the moment with grandchildren but I will get back to you later this evening to give you more details of my situation. Lots of hugs. Great to find someone in the same position. 

Hi Sallyrango,

I am a year past 1st chemo and also have neuropathy in both feet but not so bad as yours. It's a numbness and pins and needles but doesn't stop me walking, although I try to avoid driving now as that lack of feeling seems weird.

I am told it is unlikely to improve but that may not be true in your case, which is the worst I have heard about. Of course, I am no expert but if yours is so bad I would have expected it to improve but not go totally. If it were me I would push my onco as the 'neuropathy doesn't improve' is probably the standard mantra and they need to be aware yours is unusually bad.

Best of luck,

Steve

Hi Sallyrango,

I am a year past 1st chemo and also have neuropathy in both feet but not so bad as yours. It's a numbness and pins and needles but doesn't stop me walking, although I try to avoid driving now as that lack of feeling seems weird.

I am told it is unlikely to improve but that may not be true in your case, which is the worst I have heard about. Of course, I am no expert but if yours is so bad I would have expected it to improve but not go totally. If it were me I would push my onco as the 'neuropathy doesn't improve' is probably the standard mantra and they need to be aware yours is unusually bad.

Best of luck,

Steve

Mine is not neuropathy - in fact I refused to take Oxaliplatin which can cause neuropathy, as I knew that could persist after chemo and I wasn't willing to risk it.   Min is what they call "hand/foot syndrome" or palmer-plantar syndrome and is strongly associated with Capecitabine and 5 FU.   The strange thing is that it is meant to recover when you stop the chemo, and mine hasn't. 

Hi Steve,

Thanks for your reply.

Mine is not neuropathy - in fact I refused to take Oxaliplatin which can cause neuropathy, as I knew that could persist after chemo and I wasn't willing to risk it.   Mine is what they call "hand/foot syndrome" or palmer-plantar syndrome and is strongly associated with Capecitabine and 5 FU.   The strange thing is that it is meant to recover when you stop the chemo, and mine hasn't! 

Sally

Hi . Yes it’s hand and foot from the capecitabine. I started to get it mildly when I was on a low dose with my radiotherapy pre op so probably should have spoken out earlier during my post op chemo when it started up again. Swept the kitchen floor 3 times yesterday cursing my husband under my breath (he’s a bricklayer) but eventually realised that the ‘gritty feeling’ was my feet not the floor!

Let me know how you get on with the onc.

Karen x

Hi Sally,

Thats interesting. I had Cap as well and have assumed Neuropathy but maybe it is the palmer-plantar syndrome too.

I will investigate further,

thank you

Steve