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Anyone doing xelox and xeloda. Please help

Posted: Tue Jan 02, 2018 11:50 am
by Hopegirl
Just wondering if anyone else is doing xelox n taking xeloda pills for 14 days straight . I’m having a hard time with nausea. It’s already been a week taking the pills and this is only my 2nd cycle . I have Ativan , compazine to take but I do not like the Ativan it makes dizzy n kinda groggy . Will the nausea go away . My first cycle wasn’t this bad with nausea. Is this gonna keep getting worst . I’m sorry so many questions . I’m so sensitive to meds so this makes it worst . My Xanax helps with my anxiety disorder n some nausea also but I don’t want to keep taking my Xanax because I don’t want to get addicted to it . Any advice Thank you

Re: Anyone doing xelox and xeloda. Please help

Posted: Tue Jan 02, 2018 12:17 pm
by Lee
Call the Onc and tell them about your nausea. There are other meds that might work better. Hopefully other will come along with what worked for them.

I'm going to recommend get some ginger. Ginger is good for nausea. Whether it's ginger snap cookies, soda ginger ale or ginger root. Hopefully it will get you feeling better soon.

Good luck, nausea is the worst.

Lee

Re: Anyone doing xelox and xeloda. Please help

Posted: Tue Jan 02, 2018 4:40 pm
by juliej
Agree with Lee about trying ginger. It works for many people. Don't let your stomach get too empty in-between meals. Nibble on Goldfish crackers, ginger, whatever works for you. And make sure you are drinking plenty of water (or, even better, water with electrolytes).

Also, be careful with the timing of the Xeloda. The directions say to take with a *full glass* of water (8 ounces/240 milliliters) within 30 minutes after a meal. However, each patient seems to have a different "sweet spot" to take the pills. For example, I took them exactly 20 minutes after eating. Any shorter or any longer and I experienced lots of nausea.

One more thing, try taking the Ativan before going to bed, not in the daytime. It will help you sleep and prevent morning nausea.

And be sure to tell your onc about the nausea. He/She might want to switch you from Compazine to Zofran, which works better for some people.

Hope this helps!
Juliej

Re: Anyone doing xelox and xeloda. Please help

Posted: Tue Jan 02, 2018 7:58 pm
by mhf1986
Yes, Xeloda can cause digestion issues. Did you get Zofran and Steroid as pre-medicine on the day of your infusion? Do call your nurse or oncologist and ask for help now and also mention this side effect before your next infusion.

DH takes 1 Ativan right before bed. We keep a stash of saltines and ginger ale as needed, hot peppermint tea is nice too. Remember to drink lots of water. His issues are at the other end :roll: and controlled by Imodium so far.

M

Re: Anyone doing xelox and xeloda. Please help

Posted: Tue Jan 02, 2018 8:39 pm
by Aqx99
Hopegirl wrote:Just wondering if anyone else is doing xelox n taking xeloda pills for 14 days straight . I’m having a hard time with nausea. It’s already been a week taking the pills and this is only my 2nd cycle . I have Ativan , compazine to take but I do not like the Ativan it makes dizzy n kinda groggy . Will the nausea go away . My first cycle wasn’t this bad with nausea. Is this gonna keep getting worst . I’m sorry so many questions . I’m so sensitive to meds so this makes it worst . My Xanax helps with my anxiety disorder n some nausea also but I don’t want to keep taking my Xanax because I don’t want to get addicted to it . Any advice Thank you


I did 6 cycles of CapeOx, with the generic version of Xeloda. Talk to your oncologist about your issues. There are a variety of medications they can try to get rid of your nausea. They gave me Phenergan, Zofran and Ativan to have on hand to use as needed. During one particularly bad incident, I called and spoke to the nurse. She relayed my issues to the PA, who called in a prescription for Compazine for me.

During each cycle, I got steroids in my premeds and took steroid tablets for three days after my infusion. Other than that one really bad incident, I didn't have a lot of nausea.

Re: Anyone doing xelox and xeloda. Please help

Posted: Wed Jan 03, 2018 6:41 am
by mpbser
My husband had stomach issues -- not quite nausea, not quite pain, but very uncomfortable and wince-inducing -- following his nighttime dosages until he figured out how to time his cimetidine and Zofran. He never had to take Zofran in the mornings, but at night he would take cimetidine (which he has been taking since diagnosis) 15-30 minutes before Xeloda, eat a snack (they say you need >500 calories), take Xeloda, then a few minutes later take Zofran.

Re: Anyone doing xelox and xeloda. Please help

Posted: Wed Jan 03, 2018 12:00 pm
by NHMike
I finished my first cycle on drugs yesterday. The main problem I had were the cold sensitivity, first bite - your typical Oxaliplatin stuff. They gave me an anti-nausea drug before the infusion of Oxaliplatin. Right now I feel quite good and hope to remain that way for the next week. I recovered from most of the symptoms after about seven days. That's only the first cycle though - many have told me that it gets progressively worse.

Re: Anyone doing xelox and xeloda. Please help

Posted: Wed Jan 03, 2018 2:27 pm
by betsydoglover
You may need a stronger anti-nausea med, but when I was on Xeloda/oxaliplatin, I found it REALLY helped to be VERY proactive with the compazine. If I took it before things got bad on a fairly regular basis, it worked and I mostly had no nausea (did still have that slightly irritated GI tract that Xeloda cause, but it wasn't terrible.)

As others have said, I sometimes took Ativan at night.

Hope you find a resolution to this.

Re: Anyone doing xelox and xeloda. Please help

Posted: Sat Jan 06, 2018 12:16 am
by Hopegirl
Hi everyone. Thank you for your replies. Sorry took me so long to comment. Feeling depressed sucks . My nausea has subsided. Now just trying to control my anxiety without taking my Xanax everyday. I do have most of the nausea meds like compazine, Zofran, and Ativan n my Xanax . I don’t like the Ativan , it made me dizzy n feeling too groggy or sleepy . I have young boys that I have to tend to and I don’t want to sleep all the time . I hate this weird burning sensation on my stomach after I take the pills not sure if anyone else gets weird stomach issues . Sigh! 4 more days to go on the pills. Cannot wait to have my 7 days break . Omg I think 3000 milligrams a day is too much to take . Is it always gonna be 6 pills a day til my last cycle . Does it go down to taking less pills at all . I know I need to ask my dr. But I don’t see him til Wednesday. Also when does the neuropathy start for you guys . Did anyone loose hair or go bald being on this regimen . My dr says my hair will go thinner but not bald

Re: Anyone doing xelox and xeloda. Please help

Posted: Sat Jan 06, 2018 9:13 am
by Aqx99
Hopegirl wrote:Hi everyone. Thank you for your replies. Sorry took me so long to comment. Feeling depressed sucks . My nausea has subsided. Now just trying to control my anxiety without taking my Xanax everyday. I do have most of the nausea meds like compazine, Zofran, and Ativan n my Xanax . I don’t like the Ativan , it made me dizzy n feeling too groggy or sleepy . I have young boys that I have to tend to and I don’t want to sleep all the time . I hate this weird burning sensation on my stomach after I take the pills not sure if anyone else gets weird stomach issues . Sigh! 4 more days to go on the pills. Cannot wait to have my 7 days break . Omg I think 3000 milligrams a day is too much to take . Is it always gonna be 6 pills a day til my last cycle . Does it go down to taking less pills at all . I know I need to ask my dr. But I don’t see him til Wednesday. Also when does the neuropathy start for you guys . Did anyone loose hair or go bald being on this regimen . My dr says my hair will go thinner but not bald


Your dose can be reduced as needed. I started on 4000mg/day, then had it reduced to 3500 and was at 3000 by the end. Keep your oncologist updated on your side effects. Call in if you need to. I had to stop cycle 2 about 4 days early because I started to get hand-foot so bad I could barely walk. I called in to let them know, and the PA advised me to stop taking the pills immediately. They had me drop the dose for cycle 3. I did not go bald, but my hair did thin considerably. I have been wearing hats since about midway through.

Re: Anyone doing xelox and xeloda. Please help

Posted: Sun Jan 07, 2018 4:02 pm
by mhf1986
Hope,

Are you taking your Xeloda 1/2 hour after eating a lite meal? Are you drinking lots of water during the day?

DH had to drop from 3000 to 2000 his second cycle because of hand/foot issues, now he is back up to 2500. His hair has slightly thinned only.

Do you have an oncology nurse you can call tomorrow?

M

Re: Anyone doing xelox and xeloda. Please help

Posted: Sun Jan 07, 2018 4:21 pm
by weisssoccermom
A few things to remember about Xeloda.

1. As others have said take it within 30 minutes after you eat. NEVER NEVER take it on an empty stomach. In addition, DO NOT take it with the meal.
2. Get OTC Nexium or another GERD like medication. When I was taking Xeloda, that was the FIRST medication that was going to be Rx'd but I was already on it. Tried taking it without it....OWWW!
3. One aspect of Xeloda that doesn't get much attention is the folic acid supplementation. First make sure you are NOT taking any folic acid supplements or even a multi-vitamin because (unless something is new) they all contain the recommended daily amount of folic acid. Remember that in the USA/Canada, our wheat is fortified with folic acid. This means that food items like: cereal, crackers, bread, pasta, rolls, etc.....the items we tend to eat with a queasy stomach.....all are fortified with folic acid. This doesn't mean that you can't eat carbs BUT......be proactive and read the labels. For example, most cereals are SUPER fortified with folic acid. Check your labels.....you will be surprised. What this all means is just that you have to be careful about how much of these foods you eat. Don't go eating a bowl of cereal for breakfast and then take your Xeloda....not a good idea. Don't eat cereal for breakfast, a sandwich for lunch, munch on some crackers and then have pasta for dinner.

BTW - reading your title....XELOX is, by definition, Xeloda and oxi. You may ask your doctor for a slightly different version of it.....one where you take Xeloda for 7 days, starting with day 1.....at the same day you get the infusion of oxi....then 7 days off of Xeloda. The difference is that you go in for the infusion every 14 days vs every 21 days.

Try getting an acid reducer and then watching your folic acid intake. Those two things together can make a world of difference.

Re: Anyone doing xelox and xeloda. Please help

Posted: Sun Jan 07, 2018 4:27 pm
by heiders33
I almost always take my Xeloda with a meal or snack because it says “take with food” on the label. I’ve never been given specific instructions beyond that. Where did you find out not to take it with a meal?

Re: Anyone doing xelox and xeloda. Please help

Posted: Sun Jan 07, 2018 4:36 pm
by weisssoccermom

Re: Anyone doing xelox and xeloda. Please help

Posted: Sun Jan 07, 2018 4:58 pm
by heiders33
Oh, ok, those links all say to take it with food or within 30 minutes after eating. I was confused by what you said about not taking it with the meal. I guess each person is different in terms of figuring out how soon to take it after eating to manage any side effects. I’ve always just taken it right after I’m done eating and have managed well.