The Colon Club

I am trying to decide whether or not to switch from the IV 5FU and pump for 46 hours to the pill form (Xeloda) for maintenance chemo. What has been your personal experiences with each of these? Your input is greatly appreciated! Just starting to really dislike the pump!!!!!

Thanks,

Stephen

Hey dear, of course the oral is much easier, but the side effects are more pronounced in my experience. I had, on a low dose of just 3000mg a day (1500x2), all my feet blackened, skin peeling, could not walk for a while - very painful raw meat spots, my hands affected too, my face browning terribly, but no much neuropathy, only cramping in the hands and numbness periodically. With 5 FU full dose, I had strong sensitivity to cold, some cramps, but do not remember more serious problems... Will find out soon - I finished only 2 rounds of Folfiri by now... Keep in mind, that you might be paying part of Xeloda costs, since it is a tablet, not IV and is administered at home. And it is VERY expensive even if you do only 20% co-pay. Depends on your coverage, of course.

Xeloda seems like the simpler option but the hand/foot syndrome may make you rethink that position. I dont enjoy the pump either but in my experience it is the better option. I had a lot of problems with my feet while on Xeloda. I ended up with an infected big toe that required minor surgery. I for one wont go back on Xeloda. I had been on it for about 3 mos.

vilca11 wrote:Hey dear, of course the oral is much easier, but the side effects are more pronounced in my experience. I had, on a low dose of just 3000mg a day (1500x2), all my feet blackened, skin peeling, could not walk for a while - very painful raw meat spots, my hands affected too, my face browning terribly, but no much neuropathy, only cramping in the hands and numbness periodically. With 5 FU full dose, I had strong sensitivity to cold, some cramps, but do not remember more serious problems... Will find out soon - I finished only 2 rounds of Folfiri by now... Keep in mind, that you might be paying part of Xeloda costs, since it is a tablet, not IV and is administered at home. And it is VERY expensive even if you do only 20% co-pay. Depends on your coverage, of course.

Vilca, did your face come back to normal once you stopped? I'm having the same problem and i have 6 cycles left!

stevieb wrote:I am trying to decide whether or not to switch from the IV 5FU and pump for 46 hours to the pill form (Xeloda) for maintenance chemo. What has been your personal experiences with each of these? Your input is greatly appreciated! Just starting to really dislike the pump!!!!!

Thanks,

Stephen

I had almost no effects on 5 fu but Xeloda was liberating as i felt normal. How long do you have to be on it?

Thanks for the replies!

Stevieb..Are you sure there is no medical difference? My DH was switched to xeloda when a lung met appearrd while was on folfiri because it reaches the lungs in some way that is more effective. No one gave him a choice..
His hand foot effects and fatigue at 4000 mg/day are worse than the combined folfiri/ 5FU regimen. But the lung met is shrinking.

As to the portable pump..his last late model version was the size of a 12oz water bottle and almost soundless. Are you stuck with a noisy one? Can you "shop"?
All the best..

I'm hating xeloda myself. Hands and feet feel like leather. The only reason to keep going g in it is so my daughter doesn't become alarmed with the pump, but thay is gonna have to be dealt with because imho it sucks....works well for me tho as far as reducing my tunit load so far...not sure if 5fu breaks down thE same in the body and would do as well..

Vilca, did your face come back to normal once you stopped? I'm having the same problem and i have 6 cycles left!

Lydia, not much yet, but I am using Bioderma (European staple for the face - simply wonderful line, they have it on Amazon, but it takes a few months to get full line, I bought mine in London), and it is coming off... I quit Xeloda only recently, about 3 mo ago... Awful pigmentation, but, hey, the looks at 60 when you have cancer is a matter of whimsical desires... Have to admit, that I hated looking in the mirror, nevertheless... Used to see a beautiful face, even at 59 - no wrinkles at all, but the year on Xeloda and now Folfiri - dark skin and bags under the eyes with deep, pronounced lines of dark pigmentation.... I am lucky my husband adores me in any shape and form, but if I was younger, I would go nuts having the look like this...

I remember an acquaintance of mine, also Russian. About 12 years ago, I went to Hopkins Oncology Dept for a meeting, and on my way way thru Weinberg building, saw Elena in a wheel chair - her daughter was taking her to the chemo unit. I did not know that Elena got stomach cancer. Seeing that formerly beautiful woman still trying to look good in her wheelchair just killed me - it was a yellow skeleton with brightly applied make up, lashes were painted under the eyes, big red lips on a face that does not have any more meat on it - that was scary, devastating, horrible... I barely held the tears and made a smile... Thanks God that I did not say what people are usually saying to us - "you look good"... So, I use just a tiny bit of make up - a bit of blush on the cheeks and a bit of neutral lipstick... Just not to scare people

I'd pick xeloda. Once I figured out how to do xeloda right, I had an ok time on it. I hate the pump with everything I had.

For me, tons of water, keeping my feet dry and in shoes/sandals and taking day 8 of 14 off made a huge difference.

Elise