Xeloda side effects

[elise]

Hi

Does anyone else on Xeloda have a feeling like they are uncomfortable in their own body? Complete exhaustion? Nightmares? Neuropathy so bad you can't walk unless you're wearing socks and shoes?

I was expecting to feel tired but I'm sleeping 12h every night and taking a 2h nap in the afternoon. I'm getting nothing done and I feel like total garbage. And every day is getting worse... holy crap... no one I know that's done chemo has been this bad.

Does it get worse and worse or will my body get used to it?

Elise

[Sunwaterandsky]

High Elise,

I was exhausted on the xelox mix but felt my energy returning when the oxali portion had to be dropped. The good news is that my energy levels have bounced back up after treatment. I still have a little further to go in my re-energising, but it is coming.

[Iwillsurvive7]

Hello Elise,

I'm on my second cycle of Xeloda, have not had any of the side effects that you describe. My side effects have been some nausea which i'm controling with anti nausea meds when needed and a bad taste in my mouth. I'm two weeks on one week off, 5 pills of 500 mg in the morning and 5 in the evening. My main problem is not able to get enought sleep. Because we're required to drink so much water with Xeloda, I find myself going to the bath room about 5 - 6 times during the night.

Rod

[Laurettas]

My husband is just going to begin Xeloda in a couple of weeks so we don't have any personal experience but I have heard that one needs to be careful of folic acid intake because it can make the side effects worse. This can be an issue because all of our flour is fortified with folic acid in the US. Will tell you in a month how the side effects are for my husband!

[NWgirl]

Things that have helped me manage fatigue and related issues while on chemo (I've been on FOLFOX, Xeloda, Avastin, Irinotecan) include:

Acupuncture

Supplements - even basic supplements like calcium, Vitamin D, Magnesium, garlic - really have helped me keep my energy levels up. These are pretty tame - but of course run any supplements you are considering by your oncologist first.

Strangely, for me, exercise doesn't help a lot. For some people it does. It just makes me even more tired. If I have energy, I will try to walk, but I don't push it. I just do what I can. I tried pushing through the fatigue once and barely made it through my walk and back to my car (I was at a park). So when I do have some energy, I try to take advantage of a short walk at that time.

I don't find it "gets better" unless you change something. Chemo is chemo - it just doesn't get better on its own without some change on your part. Chemo just SUCKS!!!!!!

[RixInPhx]

You don't have 'neuropathy'.
Neuropathy is LACK of feeling, from death of neve cells (caused by Oxaliplatin, NOT Xeloda).

From Xeloda you get hand-foot syndrome, where the actual 5-FU molecules seep-out thru the fine capillaries of the soles of the feet, and eat the skin cells.
This causes exposure of the nerve cells (which havn't died and are very sensitive) and PAIN.

Read the information that your onc's office gave you regarding Xeloda, and the manufacturer's online data.
Follow the recommendations for treating hand-foot syndrome.

It will still be painful; tell your onc, and get Rx's as required for other products.

HTH,
-Rick

[BrownBagger]

What else are you taking? I had no problems with Xeloda, but on the two occasions that I took Compazine for nausea, it wiped me out. My point is it might be something else.

[Bob_Weiss]

Your symptom description makes me suspect that you are taking Oxalyplatin in addition to the Xeloda. I had Xeloda only, and the symptoms were generally mild. The exception was the hand/foot syndrome, which became progressively more bothersome as the rounds progressed.

[cecioboe]

Jim felt miserable with the Xeloda but he was also doing radiation simultaneously. He had severe fatigue, tingling and numbness in his fingers and nausea. Also had stomach pains. We attribute part of this to radiation, but his oncologist told us some people don't tolerate Xeloda very well.
Are you eating on schedule when you take it?
Talk to your oncologist and see what he has to offer...

I hope you start to feel better.

[IceGal]

Hi Elise!

I just finished 8 rounds of Xeloda (dropped the Oxy after 2nd round due to pulmonary emboli) and can totally relate to what you're saying!

Exhaustion - check (I was getting around 10 - 12 hours sleep per night and didn't allow myself to nap)
Energy Level at Zero - check (it sometimes took me 3 tries to get the entire dishwasher emptied cuz I had to take a rest or two --- exercise just made me feel worse)
Nightmares - check (woke me up frequently and then took a while to get back to sleep)
Nausea - check (kept pretty much under control with ondansetron and prochlorazine taken on schedule)
Diarrhea - check (6 to 10 times per day, with no apparent relation to diet, except salads added a whole new definition for "salad shooter" )
Abdominal pain - check (again, no relation to diet, no apparent cause, finally got it under control with percocets starting at round 6)
Hand / Foot Syndrome - actually, I seemed to mostly miss this one (Yay!), but I moisturized continuously and exfoliated my feet almost daily (I was on 50mg per day of vitamin B6 with the permission of my onc)
Brain Fog - check (it took a lot for me to follow conversations, and I didn't even try to get into books or tv shows that would force me to think - it wasn't going to happen!)

I'm almost 4 weeks out from my last dose, and almost everything either has cleared up or is at least getting better. My onc figured that I'm just one of those on the "nasty" end of the bell curve for reacting to chemo (I even managed to get more pulmonary emboli while taking low-molecular-weight heparin shots during the chemo, and had diverticulitis at the end requiring a couple of weeks of antibiotics).

Talk to your onc about it and have him make sure that there isn't another cause (pulmonary emboli can make you pretty darned tired, too), and get their recommendations for what you can do to deal with the side-effects. If you do happen to be like me on that "nasty" end, then please take heart that it DOES get better as soon as you're done, and it improves actually pretty quickly.

Hope you find some ways to feel better!

Best,
Laurie

[NedPlease]

I actually do have some neuropathy with the Xeloda. Thumbs and fingertips mostly, and not as severe as what I experienced with Folfox.
Generally, I feel like I have the flu all the time. I would expect it's possible that it get worse, but it may not.
Going into my fourth month now on a five day on/two day off cycle (with a five day break at each five week mark- my body has screamed UNCLE at that point), with a constant state of feeling blah and diarrhea management.
Still, I prefer it to the infusion of the debilitating Folfox.

[elise]

Only other things I'm on are PROCHLORPERAZINE for nausea and celebrex. I've been on celebrex for long enough (years) to know it has nothing to do with that.

Wound up in emerg today with a nasty rash all over both arms and face/ears. Hives on my back and legs too.

You're right that it's not neuropathy, it is hand and foot syndrome. NASTY! It was mostly in my feet and now it's full force in my hands too. I've read and follow all the info on how to deal with it.

I'm not sure that the symptoms I'm having is worth a 2% reduction in reoccurrence down the road. It's so depressing.

Elise

[Guinevere]

I thought the pain from the Xeloda was part of the neuropathy from the effects of Oxaliplatin until my onc explained the numbness was from the Oxali and the stabbing pain was from the Xeloda. Yea...
Anyway, I'm almost three weeks out from taking anything (waiting to go on new regimen of Oxali and Erbitux) and my feet are healing nicely and last night was the first time in over a week that I had the stabbing pain in my feet so it will get better after you're done with the Xeloda.
When I was on the full dose of Xeloda (3000 mg daily), the fatigue was overwhelming and the nausea was too. Only when we backed off of it some (down to 2000 mg daily with B6 supplement) did it get any better.
My onc told me it was okay to take the B6. So many supplements work against the chemo that it's always a good idea to check with them first. I'm continuing the B6 until I run out just so it might help with the residual hand/foot stuff.
Last year before my surgery, I did 6 weeks of Xeloda and then started taking it again in November and went 9 rounds with that (2 weeks on and 1 week off). It seems the week off in between really helped in my toleration of the drug to some extent.
I wish you all the best! Just remember, you're fighting an ugly beast and you can do anything for a little while.
God bless ~
Guinevere

[RixInPhx]

Guinevere-
It's my understanding that Oxaliplatin ia only effective against CRC when used in conjunction with 5FU/Xeloda, and is never used without it.
Last fall I was on Erbitux plus Irinotecan (which can be used without 5-FU), so maybe that's what is proposed?

Just my 2-cents.
-Rick

[Guinevere]

Guinevere-
It's my understanding that Oxaliplatin ia only effective against CRC when used in conjunction with 5FU/Xeloda, and is never used without it.
Last fall I was on Erbitux plus Irinotecan (which can be used without 5-FU), so maybe that's what is proposed?

Just my 2-cents.
-Rick

Rick,
Yeah, I'll be starting Eributux and Irinotecan some time this week, I think. I've been on Iri since last fall along with Xeloda but the tumor started growing again so we're trying this combo.
It's believed that the Oxaliplatin part of the Folfox was what caused the neuropathy I've dealt with since I started that regimen. Thank God, it's just about gone and I can feel my toes now! Yea!
Thanks for checking because I don't want anyone to be more confused than they have to be. With this disease, there's plenty of things to be confused about for sure!