Neuropathy with Taxol

Hi @Kiki_Dances60

I am sorry you have had so many side effects with your chemo. Many people including myself have had success with ice treatment for neuropathy.  There are quite a few posts about this.  Please check with the oncologist before you start it.  Best of luck with your treatment.
https://onlinenetwork.bcna.org.au/discussion/22200/ice-therapy-success-no-peripheral-neuropathy-all-nails-intact-no-mouth-sores

Dear @Kiki_Dances60

I had a rather similar experience with PN and Taxol. I also had discoloured nails - a sort of very light tan on my fingers (smoker’s nails almost, although I don’t smoke!) but my toes were awful - black, grey, chalk white and thickened! My oncologist deemed it a known side effect! Didn’t lose any and they all grew out although one big toenail still gets slight discolourations from time to time.
Most PN clears up after treatment but some effects can linger lengthily so I think it’s worth trying anything that might help. Like you, my toes and toenails really hurt a lot, my feet felt numb in some patches and with very distorted feeling in others. I discussed stopping, limped on (not figuratively) for 11 doses but fully intended to skip the 12th, when I discovered a lump under my arm! Long story short, benign tumour that may have been there for ages. But it made me swallow and have my final Taxol dose! I won’t lie, I still have funny feet - no pain, that cleared up very quickly (possibly Vitamin B helped, unlikely to do any harm) but I still get odd sensations. The good news is that my feet are still improving - the rate is glacial but all in the same direction. Many oncology nurses believe that 80% of the dose will still be a therapeutic dose. But it’s a decision you need to think about.
I can’t help with the wheeze, I mercifully didn’t get that, but I hope it eases up soon. Best wishes. 

I started to get tingling /PN symptoms around week 8 of taxcel - not as bad as what you’re describing. I had preexisting fasciitis (mild) with one foot which flared up daily once on taxcel.  Hands affected as well. My oncologist was concerned and after discussion with me , she reduced dosage to 75% strength , with aim to get me to week 11 at least. She said she’d discontinue it if it did not result in lesser symptoms. Luckily that worked for me - symptoms reduced , so I about to have final,dose week 12 on 1st December. Had your oncologist discussed that with you as a option? We all know the taxcel is a important treatment option for us , but PN symptoms will not resolve completely if they get severe so there’s a balancing act between benefits of taxcel,and damage to nerves. 

Hi, im going through this right now too. Im on my 7th round of taxol and i can barely walk for about 3 days after the infusion.the skin on the soles of my feet is bright red and the skin there and on my toes is peeling off. My hands are puffly and my nails brown. I cant undo packaging now.both my hands and feet i get shooting pains. Oncologist wants to continue as long as possible. Guess whilst i can endure it i will. Like you im concerned about long term. I cant currently crochet which i find depressing. 

I developed PN during Taxol (can't remember exactly when) and the onc monitored it very closely.  I think by the time I finished it was going up my legs and was in my fingers.  I do recall that one of his questions was whether I could manage my earrings.  It's important to remember that the amount of treatments suggested is more about what most bodies can tolerate not about the amount needed for the cancer - they don't really know exactly what that is.  That's why they give you a lower target to try to reach with every treatment after that being a bonus.  For me, 2 years after treatment, I still have PN in one foot.  Mostly it's not a big deal but it can impact on balance so I'm very grateful that it's not worse.  Funnily enough my nails were fine during treatment - 18 months later my big toe nails have started to lift.

Thank you AFraser, Sister, noosa_blue150, PV123 and MicheleR, for all your responses. Some of you have done it very tough. Nerve repair is a glacial process, as you say, AFraser. Are you having massage, exercises or any physio to help? What resilience, all of you, I’m so impressed.🌸🌸🌸 Thank you PV123 for the reminder about ice treatment. Hospital has never suggested it. I’ll try and remember to request it next week! They reduced my dose to 75% this week and I don’t think my neuropathy symptoms are worse, but the wheeze was pretty bad that night. Better with 1/2 Dexamethasone after breakfast. Oncologist has suggested changing to CMF for last 4 weeks, if side effects worsen. We’ll see! ✊

hope,reduced dosage works for you .Good,luck . 

I did try ice therapy.  I had my hands double gloved and in jugs of ice during chemo.  Feet were in socks with ice packs.  I managed to continue with ice therapy for about 4 out of the 12 Taxol sessions and my big toe nails lifted.  Was advised I could no longer do this.   I painted the rest of my toes with black nail polish.  Am off to see podiatrist this afternoon to cut off some more damaged toe nails.   I continued on with my hands for about another 2 weeks.   After finishing 12 rounds of Taxol.I have PN in my toes that does hurt a bit.   Had prexisting Plantar Fascitis which has flared up and had heel spurs that have also flared up.   Feet are painful.    Finger nails now starting to ache.     Good Luck @Kiki_Dances60  

Dear @Kiki_Dances60
The only thing that’s proposed much for PN is pain relief - sensible, but I don’t now have pain! So from experience only - walking is good, even if you feel unbalanced (just be careful) but standing still for more than half an hour or so is not. The more you can use your brain to override misleading sensations, the better your mobility. I can walk for kilometres with no problem, but running is problematic, my brain can’t override fast enough. Massage feels good but I have no evidence of it doing anything. Paraffin wax pedicures (salon) are wonderful - no long term benefit at all but make feet feel better for a few days. I’ve tried small hard balls, rolling under the feet - may help. Nerves can self repair, but the main ingredient seems to be time and exercise. Good supportive shoes help. Best wishes. 

@Locksley Wow! That sounds like the ice packs might have caused sogginess, or was the nail damage too advanced before the ice packs went on?