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eric38's picture
Posts: 588
Joined: May 2009

speaking a s someone who is probably going to be on xeloda soon, I would like to hear some xeloda success stories. I may not want to know but i`m curious about side effects. Of course, the doctors make it sound like its no big deal. I`ve had the drip before and i hated it but the supposedly the pills are more potent with less side effects. I dont see how there would be less side effects when i am taking the chemo daily. When I was doing the drip I couldnt wait to get unhooked from that crap and get as far away from that stuff as possible.

CherylHutch's picture
Posts: 1399
Joined: Apr 2007

I hear ya about the drip, Eric! I hated it! I had a fair amount of side affects with the drip, but not so much the 5FU, but the oxy. It did some pretty severe neuropathy/nerve damage in both my legs (below the knees) and especially in my feet. I don't wish that on my worst enemy (ok, maybe one enemy ). I had mild feelings of nausea, but nothing that really required medication or anything. But I did get tired, usually the day or two after being unhooked. But the inconvenience of the drip drove me nuts!!! I couldn't find a comfortable position to sleep and having a shower was a real challenge... trying to have a complete shower but keeping the pump dry, and not getting the area where the portacath was, wet. I HATED IT!! :)

So... on to the Xeloda, which is the pill form. I have had two different times I was on it. Back when I was getting radiation on a daily basis for 6 weeks, my oncologist took me off the pump and put me on the pills. OH JOY!! Seriously... the things I hated about the pump were all gone. All I had to do was remember to take 3 pills (500 mg each) in the morning and 3 pills in the evening. I can do that. I did not have one symptom/reaction/side affect to the pills. But then, I was lucky because I didn't have one side affect to the radiation either. Other than the inconvenience of having to drive to the Cancer Agency every day for the radiation, this 6 weeks was like a vacation! :)

Ok... 3 years later, two nodules/tumours in my lungs (one in each lung) has decided to wake up and start growing. So my oncologist says we may as well nip this growth in the bud, at the same time, it hopefully will let the other tumours know that we won't accept them thinking of growing either... and IF there are any single cells starting to float about and think of landing somewhere, we'll get them too since the chemo is systemic. I also have a growth they just found in my kidney and although colon cancer does not usually travel to the kidney (so it's possible this is a new primary cancer) then this chemo will let us know if it is colon or not because the growth will either respond to the chemo, or it won't. If it doesn't, then we will ablate the enemy... if it does, then the chemo will hopefully get rid of it without any other procedure.

Soooo... she put me on Xeloda and I was expecting the same experience as the last time... just another few pills to take. Well, that's how I get the chemo... this time I take the 3 pills (1500 mg) and 1 150mg pill for a total of 1650mg in the morning and in the evening, for a total of 3300mg/day. Wellllll... for the most part, my experience is the same (IE: convenience, no nausea, no fatigue, blah, blah, blah), but unfortunately, since the Oxy did such severe nerve damage in my feet three years ago (and no, it never did get better), this chemo is attacking the nerve endings in the bottom of my heels. The first round was excruciating!! Seriously, I was going to have to give it up because although the rest of me felt fine, there was no escaping this excruciating pain in my feet. So, the second round, she lowered the dose to 1500 mg twice/day... and we changed the schedule... Mon-Fri on the pills, Sat-Sun a break, no chemo, then Mon-Fri on the pills, then a 9 day break (that would be a cycle). That worked great! I had some pain med should I need it on the weekdays, but there was only some "discomfort" with my feet... not the excruciating pain. My next appt with her we discussed it and although this worked great, she would really like me to be on the higher dose, so we figured that maybe if I tried it on the new schedule, with the break on the weekend, it wouldn't be as bad, because I'd just have to get through 5 days, knowing I was going to have a break. Ok, so Round 3 (which is the round I'm on now), I started a week ago Monday... took the pills in the morning and by 5pm the pain was starting. Oh oh. But then I got to thinking, I'm on the nerve pain blocker, Lyrica, for the nerve damage caused by the Oxy. Does it not make sense that if this chemo is affecting the damaged nerves, if we up'ped the dosage of Lyrica, it might help? So, I emailed my onc and suggested this and explained my theory... she said that if we doubled the Lyrica dosage I was already on, that wouldn't be dangerous so go for it! Lo and behold, it works! I am on the higher dose of Xeloda and double the dose of Lyrica and voila, no pain!!

Soooo, if you have a great onc who will work with you on pain management, and if Xeloda affects any current areas that might be weak, then you are going to LOVE LOVE LOVE Xeloda! Then again, we are all unique, different people, so you might find that the Xeloda does not give you any side affects (it didn't for me the first time I took it, it wasn't until AFTER I already had nerve damage, that it affected my feet).

Xeloda definitely gets the thumbs up in my books!! To show you how much it is just fine, I happen to be extremely busy right now working on two full Broadway musicals. The hours I am putting in down at the theatre/theatre office work out to be anywhere from 10-14 hours/day (and to think I do this as a volunteer so am not getting paid for this). I take my Xeloda in the morning before I leave the apartment, and then again at night (either at the theatre if I'm still there at 10pm or at home when I get home). I take my double dose of Lyrica at the same times... and I'm on my feet a lot because the theatre is about a football field length away from the office. So lots of walking back and forth. I swear, I am doing more and have more energy than the average healthy person who is not dealing with chemo!

So think of taking these tablets as just another vitamin supplement... and you can then get on with your life! :)

Posts: 3
Joined: May 2010

I have not got any serious side effects on using xeloda. The below mentioned drugs will interact with Xeloda and result in more side effects with greater intensity. The list of them are as follows..

Posts: 1736
Joined: Jul 2007

I took Xeloda after my reoccurance and surgery. It worked, I have been cancer free for almost 2 years (knock on wood). The side effects were much milder for me then the IV 5FU. I had and still have the foot nueropathy, its bothersome but manageable. Had nausea alot, but there are things for that. Honestly the hardest part was just making myself take the pills every morning and every night, knowing what your taking was going to make you feel bad. I was on a max dose of almost 5000 mg a day. I didnt really lose any weight, as I guess the week I was off I made up for the lack of eating during the 2 weeks I was on it. I did and still do fight with fatigue and its been just over a year since I finished. All in all, I would pick Xeloda over the IV 5FU anyday. Good Luck buddy!


CherylHutch's picture
Posts: 1399
Joined: Apr 2007

Wow Beth... I can only imagine how it must have felt while on the maximum dosage. I mean, if I'm having major nerve pain while on 3300mg/day, I can't imagine what I'd be going through on 5000mg/day!!!

Sooo, I would like to ad an addendum to my above post.... your mileage will vary depending on the dosage you are given. Again, everyone is different so your mileage will vary, as will everyone's dosage... but I still stand beside my choice would be Xeloda over IV/pump any day!! :)


dschreffler's picture
Posts: 58
Joined: Apr 2010

Hi Eric,

I took Xeloda for neoadjunctive with Oxi. Pills pretty easy to manage - I set alarms on my iphone to head off missing due to chemo brain, etc. If ya don;t take 'em, they aint gonna get the cancer.

I experienced dry skin on hands and feet and really watched/managed that as I have heard horror stories about Xeloda and hand/foot syndrome. Was biggest concern by my Onc nurse to watch for. I only had minor dryness with application of bag balm type ointments.

I'm on FOLFOX now and seeing similar symptoms, other then dry hands/feet, that I had during neoadjunctive, so really narrowed Xeloda to the dry skin only - for me anyway - and likley the reduce blood cells, fatigue like 5-FU.

The neoadjunctive Xeloda/Oxi/radiation really worked for me - tumor reduction "remarkable".

Check out my "about me page for full details".

Best of luck!!!!!

imagineit2010's picture
Posts: 153
Joined: Jan 2010

Eric, I'm just finishing my sixth week of Xeloda as part od my neoadjuvant treatment with daily radiation. My dose is 3000mg a day everyday for six weeks. No breaks. I was very reluctant at first but I could not have been more relieved at my tolerance. While I can't tell you how successful it has been yet I can tell you the side effects were NONE. I often worried if it was doing anything at all because I could not tell I was on anything. I had the minimal side effects from the radiation but even that was surprising how mild they were. Sure my *** has been on fire for three weeks straight but the discomfort only lasts a minute while I'm actually going #2 then it's gone. That has been the ONLY negative from my whole regiment. The docs say that could be from either treatment but likely the radiation. I only had two bouts of diahrea that only lasted a day each and I think that was due to eating something that didn't agree with me. I live a VERY healthy lifestyle cutting out EVERYTHING even remotely linked to health issues. All natural, no additives, much organics, and some specific vitamins so maybe that had something to do with it. I'll know in a few weeks if it did anything but I would say go for it. You might be pleasantly surprised.
Best of luck with your treatment choice. Be well, Chris

herdizziness's picture
Posts: 3642
Joined: Apr 2010

As I've said before I love my Xeloda. I have no cracking or anything on hands or feet, I basically have no side effects from it. I'm on my 9th round next week of Xeloda.
I don't think you should have any fear from the Xeloda. It's certainly worth the try!!
It's been good to me. I forgot to add I take 3000 milligrams a day, (3 in morning, 3 at night)two weeks on, 1 week off.

Posts: 1961
Joined: Aug 2003

I'm on 3000 mg a day. Side effects not bad. I do have problems with dry/cracked/blisters on hands and feet. I can't hike anymore but otherwise doesn't interfere with function so far.

I have mild fatigue mild nausea. Really not too bad. I continue working altho my job is pretty flexible and I do have a nap almost every day (at lunchtime or after work).

I also set an alarm on my iphone to remind me to take the pills! I have no memory whatsoever. I dont' care -- except for those pills!

My blood counts are good -- much better than when I was on 5FU, which really hammered my WBCs.

I will probably be on maintenance Xelodo again after my current cocktail -- and that's OK with me.


karguy's picture
Posts: 1024
Joined: Apr 2009

I took xeloda at the same time I took radiation,and the only side effect I had were numbing of my fingers.I had no problems with my feet,and I showered with a moisterizer soap,and was fine.Good luck

Posts: 372
Joined: Aug 2006

Post surgery-I took 5000 mg five days a week for 15 weeks with weekends off. Pre-surgery I took 6 weeks of 2000 mg Xeloda and radiation. It was post surgery with the 5000 mgs that I developed very bad hand and foot syndrome nearly quit in week 14 but stuck it out. I had to wear gloves 24/7 for 15 weeks hand and feet terrible pain and bleeding. Feet swollen so bad I couldn't tie my shoes. A ton of bag balm all the time. ONC told me it was just less effective than 5-flu. Good news is that Saturday I was wiped out but ready to go physically on Sunday. Oh the really bad news 4 1/2 years later I have a reoccurrence and am on Folfox now.

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