Help my feet are on fire

[mrsd]

Here I am once again asking for help...... my feet are on fire and are throbbing, my onc thinks it's from walking on my wooden deck in bare feet on the weekend.... but it's not getting any better, I asked about lowing the dose of 1600mg twice daily for 14 days, I am only in day 11 of the first cycle and I really want to stay on this drug, he is checking with my tomorrow to see if it has gotten any better. I have tried using lotions including Gold Bond Ultra, just wondering if anyone else has had this side effect and what worked for them. Thanks again.
Patricia

[Sheila]

Patricia
I do know they say to avoid extreme heat and extreme cold to the feet...the heat allows more of the drug to seep into the tissues, causing more pain and irritation. Do wear extremely comfy shoes...I ended up getting rid of most of my shoes....I truly lived in Flip Flops while on Xeloda!!! Still do!!

[Diana1993]

Patricia,
I have been on Xeloda since Jan. I tolerated the first round fine, then it became increasingly difficult to walk and do ordinary tasks. There are three stages, to hand foot syndrome.( a brochure will detail or look up on internet). Anyway, I read on the internet that some Doctors are recommending one week on and one week off. My Doctor didn't have a problem with me trying that. It works better for me. I have had my dose lowered from 2000mg to 1800mg and may have to lower it again. The end of week one is rough. I totally agree with Sheila, flip lops or some smooth open shoes work best. Crocs are killers with all the little nubs. I use Specto Exema Cream for my hands and feet. (less greasy).
I also read that there was a trial to see if nicotine patches might close the capillaries sp? I tried it but I don't think it worked for me. Hope this helps. Hang in there,
Hugs,
Diana

[Sherryg683]

I was on 2000mg and my feet were blistered. The day I went in for my scans and was told I was NED, I wore slippers to the drs. office. I feel for you. I had to occaisionally take a few days off to help, but lowering the dose is probably the most logical answer. I played tennis through chemo and I know that this activity aggravated the problem, try to be gentle on your hands and feet while you are on Xeloda. I used the udder cream they gave me but it really didn't help all that much...sherryg683

[mrsd]

thanks to all who replied, I can function with the discomfort and I will stay the course if my onc will allow...today I went to the local farm supply store and bought bag balm, although a bit greasy it helps for the short term......... at night I have started to do cool foot baths that feel great! thanks again it's a great comfort to be able to ask for help when it's needed and help is so forthcoming, I once again thank all who contribute to this great site

[kk1]

3200 mg/day is a very high dose to start with unless you are a really really large person. You might want to print this article in the link below for your onc.

While 3200 is what they used in the original trials, since that time doctors have found that many people can not tolerate that high of a dose and that lower doses work just as well while dramatically lowering side effects. Several of us on the board can witness to this fact. I could only handle 2500 and that is if I did 1 week on 1 week off.

other suggestions:
1. It is really important you take it on a full stomach within 15 minutes of eating.

2. If my skin was sore I would sleep with my hands and feet coated in a thick cream with socks and gloves on.


http://annonc.oxfordjournals.org/cgi/content/abstract/16/8/1289


good luck

[SoCalGal]

Hi Patricia-
I get a feeling like I've been walking on crushed glass. This is after a year on tykerb - which I believe is the culprit. I was on a bunch of other stuff throughout this past year so who knows for sure BUT here's what I've learned:

Don't let your feet get hot. DON'T walk barefoot. I used to but cannot - it will trigger "the feeling". Change your shoes a bunch. As Sheila said - flip flops are the best. Always wear socks under your tennis shoes. Recently I walked barefoot at the beach and stayed in the wet sand and surprisingly I was fine so maybe the salt water is good? Or maybe just being at the beach is good:)

Just FYI - I am one of those dry people who do not perspire but I still get this side effect at times. It is a burning feeling but also like I walked on crushed glass.

I also do cool foot soaks - add some epsom salt (not too much) and I like Aveda foot creme from the dead sea.

Flori

[mrsd]

kk1 thankfully the onc has stopped the drug today ending the cycle a day early and we'll start the next cycle at a lower dose as I suggested to him, I'm a average build person and my husband questioned the amount of drug thinking it was alot........
flori, I have done the epsom salt bath with cool not cold water and have one pair of sandals that I can wear, and my husband suggested going to the beach and walking in the salt water, we live only 10 miles from the altantic ocean and at this time of year it's definetly cold
I have used bag balm, gold star ultra cream, plain old jergins lotion and so far not much improvement, but I'm hoping that in the next week things will improve...
thanks

[MCS]

how about neuragen. sold over the counter for diabetics that have nerve endings neuropathy.
i will let you know it's expensive. about 29.99 off the shelf

maybe that will help?

love

maria