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Xeloda side effects! Those who have been or are on it please give me a hand!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Starting xeloda instead of 5fu on Monday !would like how you deal with it! what about side effects, what about affectivity ?
Thanks in advance. ( will be on xeloda/ avastin combo).

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

I switched off of xeloda to a more agressive treatment.. but I just want to say.. Xeloda has a great website and you can even find it in YouTube..
When you get the drug it should come with a big blue pouch from Genentech which has some really good info.. If you have not received it.. please go to the website and join their support group.. when the chemo nurse calls you tell them you have not recieved the package ad they will send it to you I am sure.
The basics are HandFoot syndrome and they advise to use UdderCream.. I know sounds perverted but it is really good stuff.. they will also send you a sample in the blue package..
Good Luck to you..

steved
Posts: 836
Joined: Apr 2004

I am on xeloda and have taken 5fu as both a daily and as a continuous infusion in the past. I find xeloda a fairly easy drug personally- it makes me a little tired with a mild bitter taste in the mouth but not really nauseous. I am on a cycle of two weeks- avastin infusino day 1, then 10 days xeloda, then four days rest. I do feel a little better on the four days rest but otherwise don't notice a huge difference. Compared to oxaliplatin it is a breeze- but then every one is different.

As for efficacy- it seems to be holding my tumour but hard to really know what I would be like without it as is a very slow growing cancer.

steve

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Hi Pepe
I am on Oxalyplatanin (1 day infusion/hate it) and Xeloda for 2 weeks and one week off. I started last Friday evening and take 3000 Mg/p/day. One dose in am and the other in the evening.

My last experience was after a few days uncontrollable diarrhea and I contacted my doctor and she adjusted the dowager down. This helped a lot. My skin on my palms turned brown and bottoms of my feet became dry and skin on finger tips cracked. The usually give u a starter kit with udder cream/lotion and it helps the dryness. I found the week I was off Xeloda that my body started to heal. I would eat meals at work but only drink fluids in between as well as use immodium if it meant getting through the day. It wad easier then since I was prepping for surgery and getting the tumors to shrink. I had 4 infusions.

Didn't feel like it made me tired or nauseous but the loss of fluids and diarrhea was challenging. Maybe working and having to get to a faraway bathroom didn't help....may have had some fatigue.

I am waiting for my Dr. to call with new dosage. I have lost so much weight from my surgeries and had a six hour episode of bathroom runs with a gurgly stomach yesterday that made me panicky. I had experienced the gurgly stomach before last dosage adjustment.

Hope this is helpful. From what I have read many people tolerate this med well.

Hope this goes well for you :-) I will be watching your post and hope to learn from others too.

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

I guess we should say .. Xeloda is 5FU..
When the Xeloda hits th liver it breaksdown and through the chemestry of the drug and enzymes it becomes 5FU.

The pill was developed for the concept of preserving our quality of life..
I don't know.. when I hear that term as used with this drug very often.. I get scared that I may be slipping away..

The literature also makes a statement that this drug is no more effective than other treatments.. well .. that leaves me scratching my head.. for what purpose is this drug... oh... ya... Quality of Life... very scary term I feel... Makes me feel like I have to find a notary and update my non-existant last will and testament..

Sorry.. these are my feeling about Xeloda.. I tried to temper my feeling in my first post but after reading the other responses.. I just had to get this out of my system...

I wish you all well with Xeloda and in fact I may take it again someday.. but these feeling will always be with me..

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

When you mean severe diarrhea you mean every day including the rest days ? sorry for the question, hahaha, but how many you got a day?.
Hugs!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hugs!

Sundanceh's picture
Sundanceh
Posts: 4283
Joined: Jun 2009

Pepe

The efficacy between the two seems to be about a draw...having done both quite a bit, I still lean to 5fu over Xeloda - if for nothing other than Xeloda is a pharmaceutical and as such is subject to "out of pocket" expenditures on our health plan.

Granted, that I would only have to pay between $150-200 per bottle out of the $2200 cost of the drug...but that can add up pretty quickly...most of the time they put you on a 14-on and 7-off program....standard dosage is between 3000-4000 mgs a day...so with this plan it will actually cost you 2 bottles per month instead of one.

As for effects, I found stomach issues to be a problem, not huge but very irritating...Xeloda and 5-fu were about even as they both upset my stomach.

I don't remember fatigue because it was combined with either Folfox/Avastin or Folfiri...

My fingertips would turn red and be sore...it beat me up more in my feet....they split and peeled like a potato, whole sheets of skin would come off. It got so bad I could hardly stand on my feet...and putting on shoes and getting through a workday was a real challenge.

As was mentioned, the udder creams and such will be a big relief...we had a product at the drugstore called Bag Balm...it was a real greasy emollient but effective. You slather it all over your feet liberally and then put a pair of socks on to hold in the moisture.

Do that at least 3x a day...morning, early evening and before you go to bed. It will help. If you start on that right away, you will probably head off the problems I discovered. My onc at that time gave me no warning....so I was in trouble before he recommended something.

Take the short-cut and start right from the beginning.

One other thing to keep in mind...Xeloda is accumulative just like any other chemo...the longer you are on the more side effects you can have.....I did the pills one time for close to 11-months...once it builds up, it just doesn't go away....takes time to leave your system.

So, what you can do is this....when things get too tough, you can ask your onc to switch your schedule down to a 7-on and 7-off schedule....and you can drop the dosage down from 4000 mgs to about 3000 mgs with your onc's permission.

Going a week on and a week off....instead of 2 weeks on and one week off will really make a difference for you. Keep that in the holster until it gets bad enough to warrant a switch though...take as much as you can. But lowering and adjusting will keep you in the game longer...and getting something is better than nothing at all.

Lots of fans for Avastin here...I'm not one of them. The drug can cause congestive heart failure. Says so in the white pharamceutical papers that come with the drug. Most people here seem to do well with it.....I did it for 8-months with Folfox-Xeloda-Avastin....and when we bailed off the Oxy...just the Xeloda/Avastin.

The Avastin caused my heart to skip beats...I still have that side effect today as a result of taking it. Many times during the day and night, I find myself 'catching' my heartbeat and feeling like I'm trying to put it back in a rhythmic beat.

Again, most of all you fare much better than I did with it, but that's what happened to me.

Good luck! And remember..."Get On - To Get Off."

Meaning, do it and then put it behind you as quickly as possible - if that's possible.

-Craig

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

After all my chemos I know most side effects and of course avastin as well since I have been many times on it. I agree with you that is a very dangerous drug , I don't like it at all but for the moment.....!.
My main concern In this case is that Xeloda is the only one that I have never been on , so I want to compare the side effects with for example 5fu.
Do you think Craig that it's worst for stomach than 5fu?. Well......been 16 months in folfiri l suppose Its easier than it isn't ?.
Your opinion is always appreciated ! Hugs my friend!

maglets's picture
maglets
Posts: 2404
Joined: Jun 2006

oh darling boy....do hard to rply after dr. craig.....no slur intended....craig is the man
so just a little addenda with no research ...just personal pepe...I found 5fu was hard on all my nasal tissues....eyes skin...but this may have been a purely personal reaction...

xeloda was good.....definitely stomach issues....just pain abdominal pain no matter what i ate....but generally very good reaction. Not reflux with xeloda....just pain ...

good luck dear friend

mags

taraHK
Posts: 1961
Joined: Aug 2003

I much preferred Xeloda over 5FU (just personal). Mostly for the 'hassle' factor (pill vs. 48 drip). But also I had minimal side effects on Xeloda. Except, eventually, it really affected my feet. I had to give up hiking and long walks, and think carefully about footwear. I'd do it again if I could though...Of course everyone is different.

Good luck!! Keep us posted

Tara

traci43's picture
traci43
Posts: 432
Joined: Jul 2007

Pepe - I was on Xeloda, Irinotecan and Avastin last year. I went for Irinotecan and Avastin then 14 days Xeloda, a week off, then back again. First four rounds went great, very little side effexts other than feeling tired on the infusion day. Fast forawrd to round four and we left for New York a few days later. Not good has persistent diarreha from the Irinotecan and large deep blisters on my feet from the Xeloda. We can home early.

Went to my onc and she switched me to 7 days on Xeloda, 3 pills morning and night and 1/2 strength for the Irinotecan and I went another 14 rounds before I took a break. Once I made the switch in dosage, the side effects went away, although by the end I was having a lot of stomach acid. The combo killed the three tumors, but 10 months later a new spot in another area of the peritoneum has popped up.

I was a bit nervous about XELIRI--how could a pill do the same job as an IV drug? I tell you my "quality of life" was much better on XELIRI than on FOLFOX and if I have to go back on chemo I would choose XELIRI in a heartbeat. On FOLFOX I was home for three days and feeling like crap for another couple of days after that. With XELIRI I feel poorly on one day and am back to living life the next day.

Good luck, hope it works for you.

herdizziness's picture
herdizziness
Posts: 3398
Joined: Apr 2010

Xeloda was great for me. No side effects, hoping it is the same for you. It was just a matter of remembering to take the pills each morning and evening. (my heart problem was do to calcium build up, not Xeloda)
Winter Marie

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Winter I'm afraid to go back to Avastin but doc. highly recommended it! Arggggghhhhhhh!

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Good luck with it Pepe.
I did 3000mg zeloda daily (except weekends) along with radiation before I had my 1st surgery. Seemed to tolerate it well, did have some diarreea ect but could have been from the radiation also.
No nausea like from chemo infusions though, id take it over infusions any day!

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi there... I just wanted to say that I used the UdderCreame as well and it was the only thing that worked. Use it before you need it. Slather it on and then wear socks. My feet and hands were very sensitive near the end of the chemo tour. Best wishes to you and a big hug!

k1
Posts: 220
Joined: Dec 2009

One of the side effects of Xeloda listed by the manufacturer is aphasia, basically a specific kind of chemo brain symptom involving trouble with words and language. Since Xelox is the only regimen I have been on, I can't say if it's worse on Xeloda than plain 5FU, but I know it affected me.

The rest of the side effects I had on this regimen I cannot really say whether they were due to the Xeloda or the oxaliplatin, but they involved nausea, diarrhea, foot cramps, foot numbness, and awful fatigue.

The manufacturer has a plan to help offset your co-pay costs on insurance plans in the U.S. You have to fill out and application in advance.

K1

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