Hi everyone,
I’m five weeks post final chemo, had 2xEC and 4xTax. My feet and hands are still numb, tingly and painful, the symptoms are more severe at night time and interfere with my sleep.
My questions are…did other ladies experience this and if so were you treated for it, and how long before you were free of the symptoms?
Hope someone can help with advice, or their own experience.
Many thanks.
Libby x
Hi Libby
I have the same thing - my Onc said it might be permanent nerve damage. It’s not as bad as it was when I first finished chemo, but I’ve now moved onto Radiation and am experiencing pain with that now! It really is the gift that keeps giving isn’t it!
Hi Libby, I had 6 tax, finished 6 months ago. I had tingly fingers whilst on chemo but they are back to normal now. My feet however are still numb , mainly the toes, yes they still ache at night as do my legs, asked my Onc how long will this last ? A year , probably 2, may not go away at all !! I think everyone is different and yours may not last as long hopefully.
Jean
Libby I have tingling toe ends which get worse at night. My finger nail beds sometimes ache as well. Today for an unknown reason they are bad, so I am about to take two amitriptyline to help it . It does work a bit. The other thing I do in bed is have a pillow at the end of my bed so the duvet can’t touch them. I also wear socks which stops the electric sensations when touched lightly by the duvet. It is light touch that I find sets it off…all very odd. I had my last Tax at the end of November beginning of Dec ( 3 weeks to get over course) nearly ten weeks ago. I think Tax keeps biting for months. It feels as if I am mid cycle today…tight wound, tired, tingling toes, aching fingers …,URGH!!!
Cackles
I’m only 10 days past chemo no 6 and my hands and feet are particularly bad today… Actually feeling worse than when I had just finished treatment… Soles of my feet especially near my heels are painful and so are the fat bits of my hand like the heel of your hand but also tips of fingers and toes… I was also wondering how long it would be till it got better so thanks for asking this Libby.
Lulu xx
Hi Libby, I had my last Tax of 6 on 12th December - have awful neuropathy in my fingers, some tips are totally numb, and I find I am very clumsy especially when picking up small things. My feet are sooooo painful, feels like I am walking on stones with bare feet. Was put on Gabapentin by Oncologist in January but can’t say it seems to have made a dramatic difference. A friend who had FEC-T a couple of years ago said it took about six months for her fingers to stop feeling numb. xx
Thank you so much everyone for your input. My fear is it’s permanent nerve damage, if I could believe it would improve with time I’d feel less concern. It seems for most the fingers improve but not necessarily the toes and feet. I did wonder if the cause was a cumulative effect as the symptoms now are more severe than when I was on chemo, and there’s no sign of improvement.
After my op on 23rd Feb I’ll make an appointment with my GP and see if he’s able to offer me a remedy, but from what you’ve all said it seems unlikely. Gosh, I don’t think I can live with this pain and discomfort indefinitely!
Libby x
p.s. great to see you here again at BCC, Liz
Just wondering - has anyone been told not to drive with peripheral neuropathy or informed the DVLA? I had problems with my hands in 2009, now having oral chemo as have secondaries in spine. Legs a bit weaker than they used to be, can’t stand the thought of not being allowed to drive, have lost so much independance as it is. Best wishes to everyone.
Hi Libsue,
tingly hands and feet also sensitive toenails, yes I completely understand, I finished chemo back in july last year and I still get the occasional twinge in my toes and hands its mainly my feet that are affected but are gradually returning back to normal, I can actually feel my toes now instead of them being permanently numb, I think it takes time but this SE will disappear, I’m taking co-enzyme Q10 75mg per day to help with this I was recommended by a lady on the american breast cancer website.
Hope this helps
love and light
sarahlousie xx
Libsue,
I had Paclitaxol and had the strongest dose of 3 hours every 2 weeks therefore suffered terribly with numb fingers and toes. Was really worried re fingers as I type for a living. I had my last session in March last year and at that point I had no feeling in my feet to the extent that I could only wear flat shoes and fell over a few times due to lack of balance and fingers just as bad.
I religiously massaged my feet twice a day and by the time I went back to work full time in August last year I had full feeling back in my fingers with my feet not long after. Very occasionally I get a twinge or two in my feet now but only when it is really cold.
Unless you had circulation problems prior to treatment you should get feeling back, but it will take months rather than weeks, definitely recommend massage religiously every day to get the circulation to the ends of the toes.
Sam
Thanks sarahlouise, I’ll try co-enzyme Q10, if it helped you it may help me.
Sam, massaging makes sense, so I’ll give that a go too.
From what you are all saying, it sounds like I need to be patient as it could take months to clear.
Libby x
Hi Libby
I finished my last TAX on 18th Nov and still have altered sensation in fingers and toes. Fingers seem to be improving slightly.
In terms of drugs which can help, Gabapentin and Acetyl l carnitine have been mentioned on the boards I go to in the States and some women seem to have had relief from both of these. The second drug has been in trials for neuropathy. Maybe try googling and ask your BCN / Onc (I don’t normally tell folk to Google but don’t think the results will be too scary LOL!)
Laurie x
I finished chemo [4xfec and 4xtax] in May 2007.I still have numbness in all my toes and the tips of my fingers.I am sure it is permanent now but it seems a small price to pay if the chemo has done the trick.I had my 5 yr post dx appt in October last year and despite my tn dx all was well.
I have it too in my hands and feet. Right hand is particularly painful and wants to curl up especially after I’ve been asleep. I have 2 pairs of boots and 1 pair of flat shoes that I can wear. I walk like an old lady. It makes me feel very fed up. I had 4 AC followed by 4 Paclitaxol
every 2 weeks from July to August 2011 followed by radiotherapy which ended just before Christmas. Also am still losing toenails although fingernails are now improving. No sign of an improvement in the feet.
Onc says it may improve gradually or may be permanent. I am sitting now with feet up. Really fed up with it all. Now treatment is finished I just want want to feel better. I was quite positive all the time, but now i’m feeling really sorry for myself.
Laurie, thanks for info re drugs, I’ve Googled and they sound interesting, certainly I’ll mention them to my BCN and see what she says. The discomfort is getting worse, not better and I’m sure it’s the main reason I don’t sleep well.
Horace, congratulations on a clear 5yr check up, I too am TN and know 5yrs is a milestone, get to 8yrs and you can breathe a huge sigh of relief, best of luck. Poor you - still suffering numbness 5yrs on, is it constant, or does it come and go?
Slendablenda, I too am limited to footwear which is comfortable, some of my flat shoes are now too narrow for my fat, ugly feet as I’ve also got water retention, though that is getting better. It takes me about 10mins to pull the zip up on my one pair of comfy boots, a combination of swollen legs and clumsy numb fingers. I truly hope your numbness improves, to think it may be permanent is worrying. I don’t think I could live with this pain and discomfort forever, it makes me want to bang my head on the wall.
Thanks everyone.
Libby x