Hand foot syndrome 12 weeks after finishing chemo.

Hi Karen, I had to laugh because I constantly get that gritty feeling.  I am always stopping to take my shoes off to shake out the grit I think is in there!  It feels like when your shoes fill with sand on the beach...............   but you have to carry on walking on them. 

Hi Karen,

I saw my oncologist yesterday and she says in 22 years of work she has never seen anyone whose feet didn't heal.  She is baffled and ordered a wealth of blood tests and may refer me to dermatology or vascular. She is also putting me on B6 tablets.

A bit depressing really.   Do yours get much worse in the hot weather? Were you only on Cap or did you have Oxaliplatin too?  

Sally

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Hi Sally

Im surprised at the oncologist saying that as I know there are a lot of people on the Bowel Cancer UK site that still have problems to varying degrees. I had 5 weeks low doseage capecitabine with radiotherapy before my op and my feet started to feel a little gritty after that but it did wear off. I had a higher dose capecitabine and oxaliplatin after my op and it started up again. With hindsight I should have maybe mentioned it to the nurses earlier but my oncologist had prescribed me 9 fortnightly sessions but said ‘the fatigue will wipe you out before then’ so I was determined to prove her wrong - they stopped the oxy after session 6 and the cape after session 8 after saying my feet looked red - damn!

My feet feel sunburnt - hot, swollen and like the skin is too tight. I don’t have much sensation in them nor in the bottom third of my shins. I suppose they’re worse in warm weather because they’re even hotter although my husband claimed they were cold the other night. I think I took a form of b6 tablet during my chemo but the jury seems out on how effective it is. Just had a load of blood tests and nothing sinister there and my CEA was 1 which is good news.

So I’ll struggle on but let’s hope you can get to the bottom (or should that be sole) of yours and share your top tips.

Keep in touch

Karen x

Hi Karen,  

Oxaliplatin can cause neuropathy and if you have lost some sensation it sounds more like Peripheral neuropathy than Hand/foot. Have you seen a vascular specialist or had a proper diagnosis?  Maybe you have both!  As I didn't have Oxaliplatin (ironically because I was scared of getting neuropathy) it shouldn't be neuropathy but she was definitely going down that route in her thoughts. Mine are terrible when they get hot, but soothed by cold air and cold towels. Normally neuropathy gets worse in the cold. It's all very confusing.  My skin is sort of squidgy and wrinkly, but like yours it feels very tight, particularly under my toes.  I wonder if I have used too much moisturiser - maybe I should let the skin harden.   I think the oncologist is baffled because she sees people who had Oxaliplatin with foot problems, but not people who only had Capecitabine. 

It is great news that your last blood tests were so good.  Long may it continue.  Are you being scanned once a year?  My last scan was clear, another scan next May.

Love Sally

I think my scans are once a year but I’ve had a few complications along the way so have had interim scans due to infections etc. My last one was March which was clear and my 3 year anniversary will be in November so might ask for CEA checking again then.

Onwards and upwards!

Karen x