Hi all, really hoping someone will have some helpful advice.
About 5 weeks after my last round of chemo I started to develop chemotherapy induced peripheral neuropathy. Just numbness at first but over the last 4 or 5 weeks it has been getting progressively worse. At best, my fingers are numb and feel painfully freezing to me, although not cold to touch. At worst, my whole hand is in pain and nothing seems to ease it.
I’m currently taking
Morphine Oral Solution and have been referred to neurology.
Does anyone have any advice on how to easy the pain? Any help will be very gratefully received, I’m at my wits end.
Sorry. I replied (and deleted) as I’m having the same problem and talked about possible dose reduction then realised you were talking about your final chemo so my suggestion didn’t apply.
I have the same problem after my first Docetaxel of four and I am having a 20% dose reduction. I can’t recommend anything else to relieve the pain I’m afraid. I do sympathise though. Please speak to your BCN or Chemo unit on emergency number. I wouldn’t wait.
I have had the same in my feet. I too hada reduction in my chemotherapy to point where I had to have it weekly to lower the dose enough. I would speak to your breast care nurse too who may be able to get a message to your oncologist sooner. They say it can improve after a time which I hope yours does. I am still looking for solutions to this so any help you get please share.
I got this during my chemo ,well started to happen so my chemo was stopped, I was at risk of more damage then it was worth, mine was 1cm early stage 1, cancer was actually removed at surgery ,but all treatment was precrution.
I finished my treatment last July ,only now has the pain started to get better,it got worse when it was cold if I used my fingers/ hands more.
Hopefully it will go in time but it’s good your being referred.
Also sorry, only advice is limit phone use,look for gloves with finger tip pads, use washing up gloves, tepid water wash hands/ shower,& have some one go through diet, hopefully it’s not permanent.
This I found helpful for me.
Hi, have had similar issues with neuropathy during weekly Taxol although pain not too bad. I am on my 9th out of 12 and had a reduction in dose on the 4th or 5th because the tips of my fingers were numb. My oncologist seems to be particularly conservative about not letting it get worse. It hasn’t worsened too much since but what I have tried and apparently works is acupuncture and for the hands a finger massage ring which is used to reduce arthritis pain usually. I bought them on Amazon. Hopefully that might help you and I have read that it usually gets better after 6 months although as usual depends on individuals. Courage and hope you find something that works for you.
Nerve pain is the most difficult pain to manage, the pain from neuropathy can be absolutely soul destroying . My neuropathy is not from chemo but it’s been a big challenge to get on top of.
I’ve been through a long list of painkillers, I finally got some relief from a combination of Nortriptaline at night(20mg) and x3 300mg Gabapentin daily ( a research study found that when used in combination they could increase the impact on pain of each drug individually ). I still have days when it’s really bad though and take dihydracodeine alongside it at night .
Have you tried Amytryptalene ? Gabapentin ( on its own ) pregablin ? That was the order I was told to try them .Hope things ease for you soon .
I had numbness in my hands and horrendous pain and neuropathy down my legs and feet from Taxol. ( also lost 80% of my hair from that hateful drug). In addition to the medication they give you, perhaps massaging your hands with a ball with rubber spikes might help? I used one on my feet and hands. Squeezing a rubber toy ball might help as well.
It’s been months now since my last Taxol and it is slowly improving.
Good luck!
Thank you all for your advice. I’ve now got some massage rings which help a little, I spoken to my BC nurse and now have oral morphine and gabapentin which is taking the edge off. Also trying out different massage balls and therapy putty. Will look into acupuncture after my surgery.
Take care all x
Hello I developed Peripheral Neuropathy after my second EC. As I was a grade 2 PN treatment was stopped for a while and it went back to a grade 1. Had my 4th and last EC last week with a 20% dose reduction. Lots of pushing needed for this. Back to grade 2 PN now with constant low BP 66/45 ! So tired and dizzy. Due to start weekly Paclitaxel for 12 weeks after this. I’m worried about how bad PN might get . Consultant seems to ignore feed back from nurses.
Hi @grace2, my oncologist referred me to neurology, I have an appointment tomorrow, I will let you know how it goes and if there is any advice that might help you.
Have you tried asking for a referral? Have they given you anything to help with the pain? I now have gabapentin and oral morphine which have helped take the edge of the pain, they do not help with the constant feeling that my fingers are freezing though.
Take care x
Hello thank you for your reply. I hope your appointment goes well. No suggestion of a referral or medication at the moment . I can cope with the pain as it is currently, it’s the dizziness and constant very low BP and subsequent tiredness that I’m finding difficult.
Did you try the cold socks and gloves during treatment? If so did they help? Thanks again
Hi @grace2, my appointment was quite upsetting, I was basically told that the damage is permanent and all they can do is give medication to relieve the pain, they can’t do anything for the numbness and freezing cold feeling. I thought my neuropathy was just in my hands, I’ve felt a little bit of numbness in the tips of my toes but nothing much, when they examined me they found that I have no reflexes in my legs, ankles or feet.
I didn’t try the cold socks or gloves, I tried ice packs but couldn’t stand the cold, I wish I had now as I am constantly having to cope with ice cold fingers.
So sorry I offer anything more positive but I would say to go to your cancer nurse if you experience any pain. I would also make they are taking you low blood pressure seriously, you might need your chemo reduced.
Good luck with the rest of your treatment, I hope it’s kind to you. x
Hi NikiR I’m so sorry to hear about your appointment. What a blow. You must be upset . The medical response to chemo related PN seems to vary depending on where you are seen doesn’t it. Have you had it for long? I really hope you can be given some help to make it all more manageable. My very best wishes to you. Xx