Xeloda Reduced

[Sheila]

Well, it has taken some time but I have developed the foot redness and pain from the Xeloda....the onc. was shocked when she saw my feet Monday....I have been on it almost continually since March, and this is the first time I have had a problem. I was on 2500 mg per day in divided doses. I am taking an extra 4 days off, then reduction to 2000 mg a day....if that doesn't help, they may reduce it more. It is an awful feeling, I almost cant stand to wear shoes. I am going to look like an idiot in Illinois in the winter wearing flip flops. That is about all I can tolerate right now.The other side effects that I had on Herceptin are also worsening...the runny nose, watery eyes and the sore fingertips that crack and the skin comes off. I remind myself that as uncomfortable as it is, the medicine seems to be working so I will continue.

[Becky]

Dear Sheila


You should ask your onc for a prescription for Biofine ointment. A friend of mine had the Xeloda hand/foot syndrome and it worked well for her. It is the same ointment many radiation oncologists prescribe for the breast during rads. Maybe it will help for you. I remember that for some stupid reason, my prescription plan wouldn't cover it (although they cover everything else) and it cost $28 a tube so its not that bad of a cost.

I look forward to meeting you soon.

Becky

[Sandy H]

That is not a fun thing to have. I had it in the winter and had to wear those thick achorn slippers with about three pairs of socks. I could hardly walk it felt like I didn't have any skin on the soles of my feet. It got worse when I stopped it as my feet all peeled and toes cracked. I used lots of cream and really thought I was going to miss this foot and hand syndrome but low and behold it got me. I told the oncologist when it starts this time I am done until it clears up. Its too cold in Maine to wear slippers outside although, they do have some nice slippers these days! Gives us an excuse to buy a pair of these. hugs, Sandy

[Sheila]

Thanks Sandy and Becky...I thought I was going to get by without getting it...then bam, all of a sudden....like I said, flip flops or footies...not too cool when its 30 degrees outside! I will ask about the ointment.

Thank You Both...thats what I like about this board...someone always has an answer or a prayer. Look forward to meeting you too Becky...it is coming fast.!

[IRENE FROM TAMPA]

SHEILA -

Gosh I am sorry that after so much time you did develope the hand/foot horror.

Mine started right away when I started on the Xeloda and we had to reduce dosage from 3000mg to 2650mg.

My fingers are all cracked now and those tiny little cracks that look like nothing sure do hurt. My feet are always a mess. I don't think I have worn closed in shoes for years now. Good thing I live in Florida. I think this is why I got such a HUGE blister on the bottom of one of my feet because my skin was already so sensitive.

I am going to ask my doctor about that Biofine Ointment to see if that works better then everything I have tried.

Unfortunately, the side effects of some of these drugs are difficult to deal with. I keep telling myself that it is better then getting nausea, which I never have thank goodness, but we do have to walk and use our hands a lot so it makes it difficult none the less.

Sheila - we are just going to have to relax more and have others wait on us huh? lol

Take care and hope your issues get resolved.

[Sheila]

Irene
Hopefully the ointment will work on both of us! I take this as a sign that I was meant to live in Florida and wear flipflops everyday...I spent alot of time in Tampa years ago as my brother was stationed at MacDill when he returned from Viet Nam....I love the Keys, and Destin and Seaside....I have family in St Pete and Lakeland...if I come that way again, Maybe we can get together for lunch.
Thanks!

[Shell]

Sheila-


I used the udderly smooth udder cream which was very helpful, and my local drugstore carried it.

My fingers would crack at the tips, and it was hard to do anything about them as the band aids kept falling off, but when they started to crack at the joints, I would just put a dab of antiobiotic cream on a band aid and keep it covered, and that worked really well (though certainly is not the prettiest thing to see...)

Regards,
Shell

[IRENE FROM TAMPA]

SHEILA - If you do come to Tampa, please let me know and we can link up
somewhere and have lunch. That would be great.

SHELL - I have tried the utter balm but you cant use all day. I havent
tried the cream. My cracks are on the tips and I know what
you mean about the band-aides.

My doctors office just gave me samples of something called XClair cream used for patients having taken radiation. She told me to try this and if it works I will get a script for some.

Will let you both know if this works.

[Sandy H]

This may help! I can tell when I am going to get a crack so this is what I do. I put on lots of cream we all have our own, and then I put on a bandaide at night. Keeps its moist and then during the day I try to keep my hands out of water. I wear gloves if I do have to have them in water this seems to help me. Of course, I have only had 3 cycles and am on a lower dose then the rest are-2000 mgs. Have to keep trying different things. hugs, Sandy

[Lolly]

Sheila, sorry you're having this to deal with :( I didn't see your post until now so am just so surprised and sorry as you were doing so well. At least it's also playing hob with the cancer, so your pain is not in vain, lol.

I've been using a newish ointment during radiation, and my skin is holding up so well my rad onc keeps adding on treatments, will finally have my last one tomorrow, #38 when I was originally scheduled for 33. The ointment is called "Aquaphor", from the same company that makes Eucerin. This Aquaphor is amazing stuff, comes in a tube for the purse and a small tub for home use. It has kept my underarm area very comfortable right up to the last day, which is not like the last time I had rads; skin got so tight and dry I was afraid to move or stretch for fear it would literally crack. Anyway, you might give it a try. Hope your reduced dose helps reduce the hf thing.

<3 Lolly