Forum Discussion

Qld's avatar
Qld
Member
5 years ago

Peripheral neuropathy - getting worse despite ending Taxel after 6 treatments

Hello I am new to online discussion so not quite sure what to do. despite ending Taxel after only 6 out of 12 treatments, and the last two reduced dosage, the peripheral neuropathy is getting worse. I am now 4 weeks post-Taxel and one week into AC. For those of you who got PN, what have you found has helped reduce advancement?
  • @Qld welcome to the forum! It’s a bummer about the taxane, especially as it has caused a peripheral neuropathy. 

    I was also informed that it could get worse after treatment as well as just continuing. Is it hands feet or both? Do you get any pain too?

    There is a medication that has been scientifically researched for reducing peripheral neuropathy symptoms caused by chemo agents such as Taxol. It’s called duloxetine. It would be worth asking your medical team about this as it is on prescription, whether it might be useful in your situation?

    hang in there, AC is a world of its own. Hopefully you will sail through!

    Lots of love Tinks xx
  • Thank you, both, for your suggestions and support. I will walk more -just hampered by still exuding serum at mastectomy site 3 months after the surgery so trying not to be too energetic. No one at the major hospital I am going to offered or even mentioned ice socks or gloves! 
  • My feet are the worst too - although my extremely regular walking over the last ten weeks has actually helped -they are still improving which is good but it’s glacier-like speed. Once my toes stopped hurting, standing on tiptoe did help although it was a long time before I could do so without holding on to something or someone. Recently I have even managed down dog!! Usually it feels like I am either walking on an uneven surface, or on a bouncy mattress, the latter is the hardest as it affects your balance. Walking is fine, I can override the brain messages, running isn’t, and standing still for more than an hour isn’t great either. Footpaths in Lisbon with small, slippery marble cobbles were a challenge! But no pain, and NED to date. Look on the bright side. 
  • @Qld  PN is the pits, it seems so unfair after you have dragged yourself through the rest. Thankfully I didn't have any problem with my hands as the hospital provided ice mittens during treat. No ice socks, unfortunately.
    My PN was like a literal stone in my shoe (that wasn't there) for nearly 12 months. I moaned about it continually because it was the one lingering effect that nothing could fix.
    I'm three years on from my last chemo and there are still lingering hints. During the worst of it I found that keeping moving was the best management. The problem was I kept tripping over because, though my feet felt like a bundle of burrs,  I couldn't figure out where they where. Really simple stuff like pushing up onto your toes/ standing on one foot whenever you think of it helps stop the domino effect which can affect your plantar fascia. I found that out too late.
    If your feet are worst affected, get a hiking pole and take it with you. Everywhere. It can give you some stability walking up and down stairs and doesn't have the same 'look' as a walking stick. You can pretend you are just heading off on a hike...
    The frustrating thing is that you can free yourself up, then it's back when you sit down again. 
    There are some drugs that can help both the tingle/burn and the hot flushes (if that's a problem too) but won't solve the issue.  Ask your onc or GP. Hang in there Mxx

  • Thank you both for your prompt reply and your info. I was not told that it can continue after treatment finishes. I was worried that the AC, which I was told wasn’t a problem for PN, was in fact the cause of its getting worse. I am on Vit B12 and someone suggested acupuncture so have an appointment with an acupuncturist who apparently has some experience with PN. I was to have been on AC first then Taxol but the oncologists apparently felt when I was due to start on 2 April, that with coronavirus starting, it was too risky. Thank you again. 
  • I was told early on that PN can continue to develop after treatment finishes, so I was a bit prepared. In my case it did start to improve after I finished Taxol, but it’s not automatic. As I had Taxol after A/C, that meant that the improvement started as chemo was over - as you are still having treatment, it may continue to have an effect on the PN. First of all, check with your oncologist. As far as I am aware, ice treatment may not help much once the effects of PN are being felt. I was told to try vitamin B. I think it did help me but it’s variable. Belatedly I found that hot wax pedicures made my feet feel much better (temporary but nice anyway) and massage may have helped a little bit. But get your oncologist to take notice - chances are you’ll recover after chemo
    is finished but PN can linger and you’d want to avoid that if you can. Best wishes.