Any tips for dealing with chemo induced pheripel neuropathy?

hi,i am about6 months post chemo and radiotherapy although i am still recieving the 4 weekly ovarian tmplant injection and the 6 monthly bone strenghtener infusion.i also take the cancer tablet exemestate.

during the chemo i started having cipn {chemo induced pheripel neuropathy} in my feet  that made it hard to walk.now i am having it in both my hands and spreading upwards to my elbow.the only way i can describe it is that instead of bones and muscles its molten lava , the burning is so painfull then afterwards its pain and pins and needles.

my doctor has been great and has given me,cocodamol 30\500 which did nothing then gave me paracetamol with dyhdracodeine but again its not touching it.  when the pain is really bad  all i do is take my meds and sleep the best i can only to be awakened with the really hot hot burning, ive tried dipping the hands under cold water to no avail. and now i think its affecting my bathroom routine as i have ibs i take laxatives when needed but ive noticed the last two weeks that they are no longer doing the job and i have gone for over a week each time with laxatives and no motion untill i have to act like im in labour and spend ages pushing which i know is not good for me.

has anyone else gone through this  or something similar that can offer advice on what worked for them paimwise  and so forth so i can suggest them to my gp?

thanks for listening as  i dont think my family understands how painfull and debilitating this is, as they expect me to be near normal now that " the" big  treatment has been done with months ago. i have tried to explain that its a side effect but they dont understand.

  • Hello,

    just had to pop in, totally understand love. My treatments finished over a year ago and some days are a real struggle. I was hoping my PN would subside by now but by golly it hasn't, some days it feels like I've been stabbed in my big toes! I wish I had some good advice for you but sadly I haven't, I guess I just wanted to say your not on your own....I've just a book called " The cancer misfit " by saskia Lightstar, she had bc and it's about how she coped with the aftermath....the book resonates deeply...

     

    take care love ️

  • Hi Veroni, 

    Sorry to hear you're suffering. I also suffer daily. Sometimes it's like nettle stings, sometimes it prickles and other times it comes in the form of itching. An ice pack usually relieves the pain/discomfort but not for long. I have several now and alternate them. I also take amitriptyline and gabapentin for my peripheral neuropathy. 

    If your GP won't prescribe the drugs mentioned you can either ask for a review at your local hospice or get a referral to the pain team.

    I hope you're feeling better soon. Barb

  • Hi ladies, thank you for the replys. I already am on amytrptaline and  cdrydamol.  I've also other health problems,and take other meds so I guess they have to work arouñd them. It's unreal the after effects from the chemo.  We fight through the chemo and radiation therapy to end up with this.  Don't get me wrong ,when it's either having cancer or this then no brainer ,lol ,

    I will be havingy bloods done next week for the bone infusion so hopefully can ask about the gabapentin them.x 

    Hope you all. Get ur PN under control xx

     

  • Hello Ladies,

    When they warn you they don't tell you how bad it can be or where, do they? I'm halfway through treatment and have really bad peripheral neuropathy in both feet, finger tips and perineal area(!)

    My left foot is particularly bad with the area slowly spreading up my calf. It really affects my balance and I now walk like a duck. Not a good look. As yet I haven't needed actual pain relief much, the occasional codeine has helped. I'm wary of opioids for the same reason as Barbm, the gut tends to shut down so I drink gallons of Movicol. My feet feel really cold to me, though they're not to touch, so a hot water bottle at night helps.

    The real reason I'm posting though is because I'm going to give acupuncture a go. I have done some research and it seems that acupuncture can be quite effective. I used to be a medical acupuncturist before I retired and successfully treated diabetic neuropathy so thought it might help with this. Acupuncture is carried out in the NHS but like so many things it's a postcode lottery so may not be available in your area. I have found a private provider near me who doesn't cost the earth so I'm going with her. If you want to do likewise make sure they are part of the British Acupuncture Council.

    I'll let you know how I get on. I've got my tingly, cold fingers crossed.

    I hope this is useful.

    Dotty26

  • Hi [@Dotty26]‍ I hope you're doing ok and sending lots of love! I wondered how the acupuncture went, if you don't mind me asking? Did it help at all? My partner is due to start chemo next week and I'm trying to get ahead of the curve and be prepared with anything that might help her. We've both used acupuncture before (not for any particular reason... just too see what it was like!) and definitely felt the benefits. I hope it helped alleviate your symptoms! x

  • Hello,

                l have had this condition in hands and feet, hands cleared after a year. still in the feet after six years. Nothing much worked drug wise and the stronger ones would just create issues of their own,so l steered clear.The only thing l found that worked was pure bloody mindedness to keep going and after a few years the brain just gives up bothering to tell you the pain is there out of exasperation, l rule it,not the other way round.Now the only time l am aware of it is when l go to bed.Sorry l cannot offer any comfort other than it affects some worse than others,and for many it will settle down and disappear,l hope the latter proves to be the case for yourself,

                                                                                                                                                    David

  • HelloPan,

    I'm afraid to say I haven't actually tried it yet although I still intend to. I've not really been well enough with very low white cells and neutrophils and I don't want to run the risk of cellulitis, unlikely it's true but I'm ultra cautious. I'll be having a break from chemo over Christmas and the New Year and will try to fit it in then. The neuropathy has improved a little over time, thank goodness. Do remember not all chemos cause peripheral neuropathy and it seems side effects and their depth affects everyone differently. For instance none of them have actually made me nauseous, just a bit queasy, for which I am very grateful.

    All the best to your partner and yourself. What a time to start chemo, two weeks before Christmas. Keep strong both of you. The cancer active website is a fount of useful information of complementary therapies.

    Dotty26 x