Anyone doing xelox and xeloda. Please help

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Hopegirl
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Location: Modesto ca

Anyone doing xelox and xeloda. Please help

Postby Hopegirl » Tue Jan 02, 2018 11:50 am

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
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

Lee
Posts: 5689
Joined: Sun Apr 16, 2006 4:09 pm

Re: Anyone doing xelox and xeloda. Please help

Postby Lee » Tue Jan 02, 2018 12:17 pm

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
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: Anyone doing xelox and xeloda. Please help

Postby juliej » Tue Jan 02, 2018 4:40 pm

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
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

mhf1986
Posts: 152
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Anyone doing xelox and xeloda. Please help

Postby mhf1986 » Tue Jan 02, 2018 7:58 pm

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
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Anyone doing xelox and xeloda. Please help

Postby Aqx99 » Tue Jan 02, 2018 8:39 pm

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.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

mpbser
Posts: 474
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone doing xelox and xeloda. Please help

Postby mpbser » Wed Jan 03, 2018 6:41 am

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.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1725
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone doing xelox and xeloda. Please help

Postby NHMike » Wed Jan 03, 2018 12:00 pm

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.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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betsydoglover
Posts: 932
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Anyone doing xelox and xeloda. Please help

Postby betsydoglover » Wed Jan 03, 2018 2:27 pm

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.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Hopegirl
Posts: 40
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Anyone doing xelox and xeloda. Please help

Postby Hopegirl » Sat Jan 06, 2018 12:16 am

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
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Anyone doing xelox and xeloda. Please help

Postby Aqx99 » Sat Jan 06, 2018 9:13 am

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.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

mhf1986
Posts: 152
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Anyone doing xelox and xeloda. Please help

Postby mhf1986 » Sun Jan 07, 2018 4:02 pm

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
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Sun Jan 07, 2018 4:21 pm

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.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

heiders33
Posts: 290
Joined: Sat Nov 04, 2017 11:08 am

Re: Anyone doing xelox and xeloda. Please help

Postby heiders33 » Sun Jan 07, 2018 4:27 pm

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?
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump
October 2018: Clear CT and colonoscopy

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Sun Jan 07, 2018 4:36 pm

Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

heiders33
Posts: 290
Joined: Sat Nov 04, 2017 11:08 am

Re: Anyone doing xelox and xeloda. Please help

Postby heiders33 » Sun Jan 07, 2018 4:58 pm

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.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump
October 2018: Clear CT and colonoscopy


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