Capecitebane side effects or is it early arthritis..?

FormerMember
FormerMember
  • 9 replies
  • 125 subscribers
  • 1072 views

Hi All, I have just completed 2nd cycle of oral capecitebane which is due to end Sept, 6 month sin total. All is going great so far in relation to experience of side effects, apart from a very sore right handRolling eyes Not sure why it is mainly my right hand, but basically it is painful in that annoying tingly, prickly way. The knuckle areas are slightly inflamed and redder than usual, making it tricky to use cutlery or do much else with it. In the morning, usually first thing, it is also difficult to bend all four fingers fully, for example, almost impossible to close hand to make a fist..  Also, at the tip if each finger, it is slightly swollen and a bit 'puffy' and can be noticed as the left hand looks normal. 

I will ring up my doc on Monday as the puffiness worries me, but would love to hear if anyone has experienced this and then gone on to have an arthritis diagnosis?? The symptoms seem very related to arthritis. I'm 46 but feeling really old at the moment and would love to use my hands as 'normal' again soon! 

Would love to hear from those with similar experiences. 

  • Hello, yes, I was on oral capecitabine for 6 mths cycle....& this began slowly over a period of time for me (in both hands.) By the 6th, it had gotten worse, & my Oncologist stopped the medication. It's called palmar plantar (it can sometimes affect the soles of the feet also.) You need to constantly use the cream they will have prescribed for you...throughout the day. If it gets too bad, your skin might peel off in areas...just be aware of it...but def. mention it to your team/ oncologist...as they may need to reduce the dosage.

    Best wishes

    Marianne

  • FormerMember
    FormerMember in reply to Marianne26

    Thanks for that info Marianne! I have not previously been prescribed any creams at all, so hopefully will look at getting some next week. Take care. 

  • Hi. I had 6 months of Capecitabine which finished 3 days before the first lockdown. I think it was after my second cycle that I started to get sore hands and feet. They became very red and sore and the skin cracked and peeled badly. The cream recommended was Uderly Smooth, which is an American product only available from Amazon. I found it really runny and not very good. I went to Boots and read label on creams as it needs to contain urea. The one I got was Dermalex and was very good. It seems to be a common issue with Capecitabine as my oncologist wrote on my consent form that I was likely to get it. I used to put loads of the cream on and wear cotton gloves and socks. I hope you are not affected too badly. 

    Take care.

    Kim xx

    Blackstuff
  • Likewise, I bought 'Udderly Smooth' from Amazon....which many people sweared by, but I found useless. My Oncologist gave me several tubes of Aveeno, which I found better, though not that adequate in dealing with this problem. For me, in the end, it got so bad that my Oncologist stopped the cycles of Capecitabine after my 6th.

  • FormerMember
    FormerMember in reply to blackstuff

    Thanks Kim I will look out for that cream. I saw oncologist today, she suggested an extra week off of the meds to see if it helps. That will be then start of cycle 3, with 3 more to go. I just want to get it done really. I will get some gloves ordered today as well and perhaps delegate kitchen and cleaning tasks more!! I always seem to do too much.

    Take care, have a lovely weekend.

  • FormerMember
    FormerMember in reply to Marianne26

    Thanks Marianne, I am using an emolient which seems to be helping but I think I also need to wet my hands less! 

    Have a lovely weekend, thanks for the tips, always helpful.

  • FormerMember
    FormerMember in reply to FormerMember

    Hello all,

    I completed Capecitabine tablet treatment three weeks ago - there is an eventual end! I was on four three-week rounds.  Between rounds 2 and three, due to bad side effects of the tablets and Oxaliplatin intravenously, a 25% reduction in both doses was agreed. Due to a lower white blood cell count an extra 'off' week was needed between rounds 2 and 3. I recall feeling much better. Also, my Oxaliplatin dose was delivered over 4 instead of 2 hours. The result was side effects from both became noticeably improved: without that, I doubt I could have completed the original planned treatment. In a meeting with the consultant, she said that of those people whose data is used to show the benefits of chemo for bowel cancer, 30% had to have a reduced dose.

    Some of this may not be relevant to your situation. However, I include it to make sure you know that:

    1. Most of us seem to get side effects

    2. Agreeing a modification in treatment can be a very good idea

    I also experienced significant fingers and toes side effects. Now I am three weeks after the last tablets, the fingers are close to being back to normal. However, the tingly feeling in my toes is a bit more pronounced than during active treatment, but completely bearable, though I hope the effects ware off altogether eventually. My feet soles are quite red and flaky. I put on E45 cream daily. Note the references to Dermalex and Aveeno, which I may need to try.

    Had a scan on Wednesday with results in 2-4 weeks, so hoping for the best (and planning for if it's less than ideal)

    Best wishes to you all

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for that very informative response dcyorkroad. My oncologist today has given me an extra week off, then cycle 3 to start. Hoping the tenderness will go down on my right hand. My left hand, which I don't use, is fine! 

    All the best with your scan results, I hope the waiting time is not too anxious for you, it was for me but I think I may be able to cope with the wait better next time! Take care and enjoy your weekend, 

  • Hi

    My feet got so sore i couldn't walk hardly even with cream applied several times a day, found putting feet in ice water helped a bit but i reported to oncologist and they reduced dose which really helped,

    All the best TG