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?

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.

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!

Dear @Barks34 I am so sorry you have such a difficult outcome to live with. I still have PN after seven years but no pain. My feet just variably feel odd - sometimes just mildly odd, sometimes quite weird. About the only thing I can’t do is run (at least not very safely, lose track of where my feet are). It seems very hard that there is nothing that can be done to alleviate the pain. Vitamin B helped me during the short time my PN was painful - I also take fish oil for my creaky knees which may also have assisted. I hope someone else on the network can suggest something useful. Best wishes.

@Afraser thank you it’s good to hear that your experience is improvement however glacial!@Barks34 I’m sorry to hear of your level of pain. It’s a real bummer. I was very wary of PN, and so did cold therapy throughout paclitaxel. I got through 12 doses Ok but had 2 small reductions on 11 and 12. This was due to mild to moderate PN at the time - from dose 10. I reckon the cold therapy was what got me through 12 doses. But there’s no telling really because I did it every single time! Since finishing RT it is just as bad, really I think some days it’s worse. Tingling and numbness affect my hands and feet. If it’s bad I can’t feel properly to type or chop vegetables etc. My feet can feel like I’m walking on pebbles in my shoes- it’s the only way to describe it! Especially gets like that if I’m more active and on hard surfaces. I now find that I can pretty much guarantee it will come on with being cold, so socks in bed and keep warm in day and gloves as required. Never walk on hard floors without Ugg boots or joggers. I’m doing stretching exercises, walk when I can, take anti inflammatory meds and fish oil caps for the AI and going on a cancer wellness/recovery program that includes physio, exercise, meditation and 20 classes for flexibility balance and weights etc....i will be asking the physio about what else can I do myself for the PN? Haven’t tried acupuncture or reflexology yet. Anyone had good results with those? Or anything else?Watch out y’all I will be back online with any suggestions that I might get from the recovery team and if anything helps!! love Tinks xx

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 chemois finished but PN can linger and you’d want to avoid that if you can. Best wishes.

Peripheral neuropathy - getting worse despite ending Taxel after 6 treatments

Tinks
Member
5 years ago
@Afraser thank you it’s good to hear that your experience is improvement however glacial!

@Barks34 I’m sorry to hear of your level of pain. It’s a real bummer.

I was very wary of PN, and so did cold therapy throughout paclitaxel. I got through 12 doses Ok but had 2 small reductions on 11 and 12. This was due to mild to moderate PN at the time - from dose 10.

I reckon the cold therapy was what got me through 12 doses. But there’s no telling really because I did it every single time!

Since finishing RT it is just as bad, really I think some days it’s worse. Tingling and numbness affect my hands and feet. If it’s bad I can’t feel properly to type or chop vegetables etc.

My feet can feel like I’m walking on pebbles in my shoes- it’s the only way to describe it! Especially gets like that if I’m more active and on hard surfaces.

I now find that I can pretty much guarantee it will come on with being cold, so socks in bed and keep warm in day and gloves as required. Never walk on hard floors without Ugg boots or joggers.

I’m doing stretching exercises, walk when I can, take anti inflammatory meds and fish oil caps for the AI and going on a cancer wellness/recovery program that includes physio, exercise, meditation and 20 classes for flexibility balance and weights etc.

...i will be asking the physio about what else can I do myself for the PN? Haven’t tried acupuncture or reflexology yet. Anyone had good results with those? Or anything else?

Watch out y’all I will be back online with any suggestions that I might get from the recovery team and if anything helps!!

love Tinks xx
Afraser
Member
5 years ago
These things are very hard to predict but my PN has improved over time. The speed is glacier like but little by little they do get fractionally better.
sickgirl
Member
5 years ago
My treatments ended late 2018 apart from hormone therapy which still taking. I have PN in hands and feet and just wasn’t really given a whole lot of information at the time. Just got told it may improve in 18mths post chemo and if it didn’t it never would. Just another thing to contend with.
Afraser
Member
5 years ago
Dear @Barks34
I am so sorry you have such a difficult outcome to live with. I still have PN after seven years but no pain. My feet just variably feel odd - sometimes just mildly odd, sometimes quite weird. About the only thing I can’t do is run (at least not very safely, lose track of where my feet are). It seems very hard that there is nothing that can be done to alleviate the pain. Vitamin B helped me during the short time my PN was painful - I also take fish oil for my creaky knees which may also have assisted. I hope someone else on the network can suggest something useful. Best wishes.
Barks34
Member
5 years ago
I finished chemo in Oct 2018 and still suffer from severe PN and I have tried everything. By the end of the day I am reduced to tears. Would do anything to have a respite from the constant pain. Walking makes it worse, duloxetine doesn’t help, neither did acupuncture, massage, various creams. Have been told I will probably have it always. Cancer the disease that keeps on giving......
Tinkat
Member
5 years ago
I finished chemo (6 months course) end of January and started to suffer with PN the last 3 to 4 sessions so the dose was reduced for the last 3. I have completed 6 weeks of radiotherapy (25 sessions) and the PN is no better. My oncologist put me on neuropentin (3 times a day) which I will take for approx 6 weeks until I see her again to report in. I also have some tingling in my finger tips (very irritating as I play the ukulele!). I have dropped a few things and am taking care with my walking and particularly up and down stairs at home. My sister has been giving me some reflexology treatments as we can't have those outside of our homes at the moment. I think keeping feet warm is beneficial (I sleep with my electric blanket on before I hop into bed to keep my legs,feet and back warm. Occasionally the PN seems less bothersome so I am hopeful it will improve over time.
ddon
Member
5 years ago
My intermittent weird feelings in the ends of 5 of my fingers, as well as my discoloured fingernails, started after my 3rd AC, and didn’t get any worse during the taxol. I had all 12 of those and used ice packs on hands and feet. I don’t know if it would be classed as PN but it was definitely reduced sensation/ yuk feeling in fingertips and it came with the AC. It is much improved now.
shs14
Member
5 years ago
Hi @Qld,
A friend of mine developed PN during AC chemo, actually she was only having A chemo as had a bad reaction to the C.
She started using ice therapy (plenty of info on here on my other posts) and kept it up through Paclitaxel and had limited issues by the end. I believe that you can still get it with AC and that ice therapy can minimise progression in later infusions. I wish you luck with it.
Qld
Member
5 years ago
Hello Tinks and Afraser and thank you. No pain thank goodness just numbness in both feet and now finger tips. I will talk to the oncologist. I was getting so stressed thinking the AC was adding to the PN and knowing I have another three treatments to go. More relaxed today knowing I just have to let the Taxol effect run its course. I was specifically told by one Chemo nurse that after my 6th Taxol being a reduced dosage that the PN wouldn’t get any worse. How wrong was that! I feel quite annoyed I wasn’t warned it could get worse. However I just have to accept it. I am very glad to have found this online forum!
Afraser
Member
5 years ago
Duloxetine, like many treatments for PN, is a painkiller. Which of course is helpful if you have pain but I have yet to find anything that reduces odd sensations which are not painful but not normal.