Thinking about starting Xeloda

Xeloda
I took Xeloda while having radiation. The foot and hand syndrome started about 2 weeks in. I used to walk 2 miles a day but had to give that up when my feet started to get irritated. I used lotion and wore slippers around the house to keep them from getting to bad. I also took aleve or advil to cut down the irritation. I did not really have problems with my hands. I took it for just over a month. Good luck! Brian

It Was Me, Roy
Howdy, Roy

You were right - it was me - thanks for remembering.

I was on the Xeloda for 8 months. I was doing on the high end, 4000 mgs a day, and on the low end, 3000 mgs a day. Each pill was 500 mgs.

We tried different cycles of the drug...we started off with the typical 14 day on / 7 day off, 4 pills by morning and 4 more by evening. At the end, we were doing it 7 days on / 7 days off, 3 pills by morning, and 3 more by evening.

The guy never gave me a clue as to what to expect...and toxicity will build up quickly. My fingertips got red and I type alot for work, and it did not become a huge issue there.

But, it hurt me real bad in my feet. What happened was my feet began to crack and split open on the bottoms from the toes back to the heel...sunburnt red soles and the cracks and splits looked like ditches...very painful. It was hard to even maintain your balance and putting shoes on for work and trying to walk and stand was very difficult. Literally whole part of my feet would peel off like onions.

What worked for me was a product called BAG BALM. It can be found at your local drug store in a tin can. It is an udder cream with excellent emollient properties. Slather it all over your feet and put on socks to retain the moisture. Put it on 3x a day...in the morning, in the evening, and right before bed....do it more if you need to.

If you start on it from the beginning, you might head off any problems before they start - you'll certainly be in a better position being pro-active, instead of re-active, like I went through.

I always spread the word about this when I see someone on Xeloda, because of the pain I went through and nobody told me about it, when they easily could have. Because I was working, I had to wear shoes and that made it more difficult after the symptoms were already there. I would put on slippers at night and that helped.

The other thing I wanted to tell you about was that Xeloda is very hard on the stomach with those kind of dosages. Just kind of a burning and nauseous feeling all the time...you can take some anti-nausea meds to help with that condition. Put something soft and pleasing into your stomach to help dry up all of that stomach acid.

Hopefully, this will help you some while you take this. I never had issues with the 5fu pump and Xeloda is basically that in the pill form...but what a beating your stomach and liver takes from this drug - it's nasty but is effective.

That's the cold hard truth, but I believe in telling everybody what to expect, or at least what happened to me.

I'm wishing you all the best and let me know if you have any questions or concerns.

Take it EZ, Roy

-Craig

xeloda
I did Xeloda with radiation but only 2000 mg for six weeks. It was after the surgery that they really hit me with xeloda 5000 mg a day for 15 weeks. I developed bad hand and foot syndrome which is still affecting me three years later. It is difficult to walk for prolonged periods and walking without shoes on hard floor -no way. One of my fingers has some nerve damage. Recently, I developed a blood clot in my left leg which may or may not be related to the xeloda. During treatmant I loss some toe nails and both my hands and feet dried up and split open causing bleeding all the time. I had to wear cloth gloves and socks 24-7 with bag balm generously applied. The nerves are even worst. I remember being sound asleep and for no apparent reason my left foot would make me jump up in extreme pain. I describe it as being stabbed in the foot and having the knife twisted. The pain lasted 3-4 minutes. My hands while being treated were so painful that I had to let my nails grow out and type on a key board ( computer operator) without touching my fingers. The pain in my foot still happens now three years later but rarely and lasts only 3-4 seconds. It took alot for me to complete the 15 weeks. I can't tell you how close I came to quitting. I had to take max dose because I'm a pretty big guy. I have had broken bones had dislocations but I have never experienced such pain. Even the night after my surgery when the nurses screw up my morphine pump and I got no pain relief for 14 hours it wasn't as bad as weeks 14-15 on xeloda. I started to have difficulty choking down the pills just the smell of them was enough. Now having terrified you I am still here typing this. It is likely I was sensitive to the drug more than most so it may not affect you as badly. More importantly although I am nothing like I used to be physically, I am still NED. The rub is my surgeon said he felt confident I would not have a reoccurrence. But my oncologist insisted saying it would reduce my reoccurrence rate from 20% to 7%. Knowing what I know now I probably would have taken my chances. But I was a IIIb with no mets to any nodes and a type 3 (slow growing encapsulated) cancer. Did xeloda save by life by killing those micro-nasty cancer cells? No way to know if they were even there. My advise is do the drug. The pump with 5-fu has its own concerns for me. Would I do it again? Ask me in two more years when I reach 5 years NED and you are on your second year NED. Good Luck!

shrevebud said:

Xeloda
Hi Lou Swift:

Thanks to sharing your story and your experience with Xeloda. Sorry you had all that pain, etc. from the Xeloda. It's great that you have made the 5 year mark (NED). I'm not NED - I still have active tumors in both lobes of my liver and I have a very small, a few millimeters sized spot on one of my lungs - it apparently is not growing so we don't really know if it is metastatic disease or not and my oncologist is not worried about it - not causing me any problems and my labs and all are really good considering and my CEA is not that high, although there is some discussion about that test in general as an indicator. I'm going to close now, but thanks for replying to me. Have a good night/day tomorrow. Take care. Roy

Xeloda
Roy,

My husband dx'd with rectal cancer, mets to liver had 5 1/2 weeks of Xeloda and
radiation. Side effects were only occasional nausea had med's to correct.
Although, there were lots of pills, seemed much easier than the FOLOX / Avastin
he just started. He did use lots of "udder butter" on feet and hands and didn't
have any trouble. The onc. gave him a package with a sample of udder butter
and he did always wear socks, so maybe that helped.

Best of luck, we're thinking of you...