Chemotherapy

  • 35 replies
  • 84 subscribers
  • 1135 views

Hi I started my first round of chemo a week ago and within 2 days was in agony with joint pain and muscle in every joint, they gave me morphine and this helped and by day 4 the pain had gone but now I’ve got tingling in my fingers and feet which I’m guessing is the peripheral neuropathy, I’m on carboplatin and paclitaxel highest dose three weekly, has anyone else had this and if you have does the tingling stay for good? Or does it go between sessions? And is there anything they can give me to reduce it as it’s making it hard to fall asleep Disappointed I see my oncologist next week anyway so will discuss it with her but was just hoping for some advice in the meantime.

  • Hi Dizzy Dora

    I also had similar pain and was prescribed pain relief. I did find it repeated in the next cycle so it is good to be prepared for next time. 

    The tingling can be a sign of neuropathy and is something that you do need to talk to your oncologist about. Sometimes they adjust doses. Mine was worse for the first few days and then settled a bit but still persisted. I found that massaging my hands and feet helped a bit, also heat packs alternating with cold packs. I found generally moving around helped. Warm woolly socks, not tight. Also sitting with feet up. Soaking in a warm bath could ease it a bit. With my hands I found squeezing a soft ball helped a bit. Be careful when you stand up from sitting down as I found my feet would sometimes go numb and I could stumble. 

    If it is painful or causing a lot of discomfort then you could perhaps consider calling your 24 hour hospital line for advice. 

    I hope it eases soon, its not a nice sensation.

    Jane

           

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

  • Hi Dizzy Dora, 

    Like you and Jane I am on the same treatment. I have just had 2nd round. Jane has answered what I would say. Get stuff in ready for round two. I am only on paracetamol and ibuprofen but really struggled with pain this time. I will definitely see about getting something stronger for next time. It does pass so hang in there as best you can. 

    Topic x

    1. Thank you for your reply, the first pain that I had was something they called Pacletax acute pain syndrome which they gave me morphine for and that started Friday and was much better by Monday so I can cope with that if I need to, but i‘m left with the tingly toes and fingers now 10 days post treatment and worried if its like this now after the first treatment is it going to get worse each time? I also have some balls I am using for my hands but my feet are worse and any kind of heat makes them much worse, they are also worse when sitting down and when laying down overnight too, it was the one side effect I really didn’t want to get and thought it came later on not on the first round x
  • Hi Topic my pain was so bad I had to ring the helpline the first night I had it I only slept for 1/2 hour the whole night, it was like being in labour I did t know what to do with myself lol, fortunately  the morphine did help and that pain passed within days it’s more the neuropathy now that’s hanging around I just wondered if it actually goes between sessions or if this is it now till i’m done or even potentially stuck with it forever  Disappointed

  • I would make a note of the neuropathy symptoms, when they occur and what makes them better or worse. Then I would recommend talking to consultant. Mine adjusted the dosage of the paclitaxel.

    My neuropathy persisted throughout chemo. Not everyone's does though.

           

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

  • I've only really got slight tingling fingers and toes. Although this time under my heels were really sore. To the point where I struggled to walk for about 3 days. I'm day 8 today and starting to ease. Thought that was something different but maybe it is the same. I'm due to see doctor Monday so I'll ask then.

  • Thanks Jane I’ve kept a diary of how every day has been so far so that I can remember it clearly to tell her when I see her next Friday, thanks again for the reassurance that’s it’s normal, I know you have been left with it permenantly now but has it improved at all since stopping? 

  • My fingers and toes are just tingly at the moment too but I’m worried that will get worse, so if they can stay like this I can cope with it, its if it’s here permenantly that I’m worried about, I make cakes for a living so need the fine motor  skills in my hands to do it, I’m also a runner and weight train so not being able to use my feet properly either would be gutting but as my son said being here at the end of all this is the most important thing x

  • It certainly is important to just concentrate on being well at the moment and being here. Take each day as it comes. That is what I'm doing. I cycle and walk a lot and that was my big worry at the start. I'm only just ahead of you at the moment and you will change your feelings and maybe even what you do in the end with life. Take care x

  • I have seen a physiotherapist who has recommended some exercises. I also find it helps to keep moving. I have been prescribed medication but not taking due to side effects. 

    I would say it took a while to sort of settle to what it now is. Its manageable.

           

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