Hand/foot syndrome (PPE) still painful after 12 weeks off chemo

FormerMember
FormerMember
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Does anyone else have this problem?  I got the "hand foot syndome" very badly after only 10 days on my first cycle of Capecitabine.   I just managed the 2nd and 3rd cycle on a lower dose with two week breaks instead of one week. On the fourth cycle it got really bad after only 6 days so they stopped the chemo completely.  They told me it would get better after 6- 8 weeks, but it is still really painful and I'm 12 weeks on.  I did everything recommended right from the beginning (keeping them cool, applying lots of Udderly smooth cream, wearing soft socks and memory foam shoes) but as soon as the hot weather started they have really flared up and I can hardly walk anywhere.  "Cool towels" work well, but I am frustrated because I feel really well (after colorectal cancer surgery and adjuvant chemo) but I can't get out there and do the things I want.   The oncologist said I was particularly sensitive to the drug as I had lots of other weird symptoms!  

  • Well  the oncologist tested for perif /Neuro and was happy with result. He did say I could give up, or try a lower dose again. So have decided to try the lower dose for a few weeks and see how side effects go. It is apparent that I am more myself these last few days, so I guess I am not going to get to 30 weeks! We will try and get to 15, as a compromise.

    Dose started at 700, then 600 now 550 if anyone interested, but I don't know the units!!!

  • FormerMember
    FormerMember in reply to Gemmary

    I didn't know that 5FU could cause neuropathy. Did he say you have Palmar-Plantar erythrodysesthesia?  (that's what I have got) . Are you on any other chemo medication like Oxaliplatin?   I am pleased you haven't  got neuropathy.   Good luck with the rest of your course.  I didn't make it to the end of mine as the doctors stopped it due to the toxicity. 

  • DI’d it ever improve? I’ve had it about five weeks now. From my chemo. I’ve tried every type of cream. Also, my oncologist made me a compound cream. That did not help.

  • Didn’t ever go away? 

  • Hi day 12 of first cycle of capacitibine I got huge blisters on feet.I am on my week off ,have had next dosage reduced and I'm very worried. I love walking its kept me sane and I can now barely hobble around my house.Like you I did all I could to prevent this crrsm shoes etc.I wasn't sure about chemo  agonised over it and now I'm worried lower dosage means efficacy is sub optimal.Im also absolutely exhausted. Take care its really tough. 

  • Hi  This is a very old post but I’ve attached a recent one with some links in that you might like to take a look at?

     Peripheral neuropathy after chemo 

    PN can improve after stopping chemo but unfortunately lots of people still suffer with the feeling to a certain extent for several years after. There doesn’t seem to be a known cure but just a case of managing the symptoms however you can.

    Sorry I can’t be more help but please let us know if you find anything that works for you?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm