Big toes -- OUCH!!

Faith316 · April 2010

I have been battling my big toes for months and months. I know it is part of the hand/foot syndrome side effect but it is relentless. When I took 12 weekly Taxol treatments (Sept. - Nov. 2008) I had it to some degree but nothing like what I have had while taking Xeloda and Tykerb from July 2009 - January 2010. I'm no longer on Xeloda but still taking 1500mg Tykerb daily. My big toes hurt SO much. The sides of the nails are swollen and incredibly sore all the time. I can barely touch them. I am wondering if it is ingrown. Both feet are affected but it varies day to day which one is worse. Right after I quit taking the Xeloda in January, it started improving greatly along with the terrible cracks/cuts on my hands and feet. A month ago in March, the cracks/cuts on hands and feet started up again although not as severe. Also, the Tykerb rash which is more like acne reappeared. (I had it briefly last summer but then it went away. It seems odd that it would start up again 8 months after I started Tykerb.) And, especially, my big toes started getting really bad again. I am SO SICK of dealing with these toes. It hurts a lot. When the Xeloda stopped and things got so much better, I thought, finally I was past all these side effects. Can't believe it started again.

Have any of you had a big problem with your big toes during chemo? Anybody have ingrown toenails as a result of it? And, if so, did anybody go to a podiatrist about it? I am scared to go to a podiatrist but know I'm going to have to. I'm afraid that what he might do could be very painful. Anybody done this and can share with me what was done to help?

Thanks in advance for any replies.

apple · April 2010

I would slather your feet in cream.. wear a few pairs of socks and then soak them for an hour.

scrub the toes with a brush, trying to remove any scarred skin or calloused.. try cutting your nails gently.. they should be super soft.. you can also file them.

i would bet they'll clear up. hope so.

the skin on my hands and toes got so rough and scaly and my toes were swollen.

good luck.

Faith316 · April 2010

Thanks for the reply, apple. Actually, I have pretty much done all that to no avail, unfortunately. I do my feet every night and do keep the nails short but still the big toes are very painful. I'm probably going to have to break down and go to the podiatrist. I wonder if podiatrists know about chemo-related foot problems. I have been dealing with this since last summer and I am so sick of always hurting. Again, thanks for your reply.

kimber3006 · April 2010

Faith316 - I've developed red, painfully swollen big toes, too (just finished 12 Taxol this week), though your situation sounds worse, I think. I haven't been to the podiatrist yet, but will happily go if they don't resolve on their own. I developed very similarly painful ingrown nails with my pregnancy a few years ago and kept putting off going to the doctor for fear of what he would do. Never again! While not pleasant, it was nowhere near as bad an experience as I had expected. I didn't even need the pain pills he prescribed and it was such a relief to be free of the constant pain. I do remember it being a big deal to keep them very clean and germ free (when I had a normal immune system) so I'd definitely make sure they knew it was chemo-related this time.

Faith316 · April 2010

Kimber -- I know you said you didn't need the pain pills afterwards, but was the procedure of whatever he did painful? Were you numbed first. I can't quite imagine getting numbing shots in my toes. I heard today of somebody who said that their podiatrist sprayed their toes with something to numb them instead of shots. What was your experience like? Did your problem come back after you went to the podiatrist? I am wondering, since it is caused by chemo and I may be on Tykerb indefinitely (at least a year or two and maybe forever) --- wouldn't it just come back? Thanks for your reply.

kimber3006 · April 2010

It wasn't painful - just uncomfortable. I couldn't see what he was doing, and it didn't hurt (got a shot to numb it, and I should say that shots generally don't bother me a bit), but just KNOWING what was going on as I felt the pulling and heard the nail being cut made my stomach roll quite a bit. I have had very minor flare ups since the procedure was done over the years, but nothing a careful trimming couldn't clear up. He told me if the first time didn't work, to come back and he could use acid in the base to make sure the nail didn't come back in that spot at all, but as I said, up until recently it was never enough of a problem to bother with going back. It does seem like being on Tykerb might cause it to come back? I wonder if you could call around to see if any are familiar with chemo-related problems and then just go in for a consult without commiting to have anything done that day?

Faith316 · April 2010

Thank, Kimber. Calling around is a good idea.

krcll · April 2010

Faith- I don't know if what is going on with your toes is the same as with my finger, but 2 days ago it really started to ache. I've had a problem with split fingers/heels and hang nails on Tykerb, but it doesn't seem like it is any of those. Maybe an ingrown nail? Anyway, it feels kind of infected and is sore to touch.

I asked the trial nurse and she said that other patients have had good effects by soaking their fingers/toes in a combination of Pine-Sol and warm water for 10-30 minutes and then put lots of cream on. I know it sounds crazy with Pine-Sol, but Norwegians love their "green soap" (as they call it) and for a long time it was about the only soap they even had for cleaning the house. They are always soaking body parts in it and swear that it works. I will try tonight.

Keep in touch if you find something that works. I have upped my dose to 6 pills a day in the last 4 weeks and so I am assuming I might be getting some worse SE's soon.

krcll · April 2010

Faith- I just found the topic "toe infections?!" on the stage IV thread. If you haven't already seen it, you may get some good ideas.

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Faith316 · April 2010

Thanks krell. I will look for that thread. I tried soaking my feet and unfortunately, that made the inflammation worse. I got brave today and called and made an appointment with a podiatrist. Couldn't get in until May, but she put my name on the cancellation list if something opens up sooner.

Jaimieh · April 2010

Faith~ I came into your thread because I believe I am having the same issues with my big toes. They are swollen and hurt like crazy. I believe in my case that I have new nails growing underneath (there is a ledge) and that the top nail is pulling away. I have not idea how to fix it but it hurts like crazy and the other day I noticed that one side had apparently cracked and was gunky. I am on an antibiotic now so I hope it takes care of it.

Faith316 · April 2010

Went to the podiatrist today after months of putting it off because I was afraid that it might really hurt!!!! But, it did not. The pain in my big toes was caused by ingrown nails compliments of Xeloda and Tykerb. She numbed my toes by spraying something on it that would kind of freeze it. Then she cut away the ingrown part. It did not hurt at all and she was done within 5 minutes. Then a bandaid with Neosporin and I was out the door. She said that it would probably remedy the problem for 3 or 4 months and then I might need to have it done again. But, now that I know that it is no big deal and that I worried needlessly, I won't hesitate to go back and have it done again if needed.

So, if any of you are scaredy-cats like me and have put off going to a podatrist, I hope reading my account of my visit will help you be less anxious to go yourself. I have been dealing with this for probably 9 months. I wish I had gone sooner as it was no big deal and didn't hurt a bit.

jteach · April 2010

Faith and Jaimieh,

I had the exact same problems that Jaimieh has. I even started a thread about it when it started because it hurt so bad and was so gross.

I found that by squeezing that "ooze" out of my toes after bathing in a hot bath with epsom salts, the problem seemed to subside. The clincher, though, was buying Earth shoes. I'm still wearing them, because I've got that nail over nail thing still going on.

Anyway, the Earth shoes take the weight of your body OFF OF YOUR TOES! I found this to be key in my own foot recovery. The shoes have an inverted heel. Your heel is lower than the ball of your foot and your toes. Give them a try! I really thought I'd never be able to walk without pain again until I found them!

Good luck! Smile Janice

lorieg · May 2010

Faith,

I don't know how I missed this topic. I have had ingrown toenail issues on tykerb/xeloda also. I have seen the podiatrist 3-4 times b/c it keeps happening. I joked last time I was going to rent a room from him! Luckily it is warm out as I live in open toed shoes/flip-flops even though my feet are so ugly thanks to X/T!!!

BTW, I am in Houston now until the week of June 7th for rads so if you are back for f/u between now and then, let me know and maybe we can meet for coffee or something.

Lori

Big toes -- OUCH!!

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