Not tolerating Xeloda. Are there any options?

Please feel free to read, share your thoughts, your stories and connect with others!
Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Not tolerating Xeloda. Are there any options?

Postby Ulendon » Thu Aug 06, 2020 1:05 pm

I've been having a really hard time with the adjuvent Chemo. The Oxaliplatin has been going ok but I've been having terrible reactions to the Xeloda pills. We have tried a few things including throwing all the anti-naseau drugs in the book at it and lowering the dosage but nothing seems to help. I spent the last 3 days between my bed curled up with a bucket because every time I move I vomit and the infusion center getting fluids to make up for everything I am puking. No fever but hot and chills all night. Can't control my body temperature. Super high anxiety, crazy high blood pressure. I had an EKG yesterday because my heart has been racing so much.

I haven't heard from my oncologist yet what he plans to do moving forward but I am supposed to have two more rounds I think and this round I've only had 5 days of the pills rather than the 14.

Anyway, does anyone know what other options there are? I don't want to have gone through all of this to only have the cancer metastatise!
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

roadrunner
Posts: 91
Joined: Sun Jan 12, 2020 8:46 pm

Re: Not tolerating Xeloda. Are there any options?

Postby roadrunner » Thu Aug 06, 2020 1:42 pm

I’m sorry you’re having those challenges, sounds super tough. It sounds like you’re doing CAPOX. I wonder if the following are relevant questions (in no particular order):

(1) Why did they pick CAPOX as opposed to FOLFOX (I’ve read that CAPOX is tougher on you)? Xeloda is of course oral, so perhaps infusional 5-FU could be productively substituted for remaining cycles since GI troubles are prominent?

(2) When I did my initial TNT, I had a lot of issues with FOLFOX, and there was some thought about substituting Irinotecan (basically FOLFIRI, I think) for the 5-FU. My oncologists, at least, felt that would be less effective, and advised against that. But it may be an option, especially if you’ve had a lot of cycles of CAPOX. FWIW, Irinotecan is I think reputed to be harder in the GI system than 5-FU/Xeloda, but of course YMMV.

(3) I don’t think you said how many cycles you’ve had. My reading and consults (in the TNT context) suggest that 8 is optimal, but there may be a trend toward 6 being at the least adequate most of the time. (The old adjuvant practice was 12, which some doctors still use.) So if you’ve had a good number of cycles, I’d ask the oncologists what the expected marginal benefit of additional cycles is. These are not magic numbers, but of course it’s ultimately a risk tolerance issue in the adjuvant context once you get past a minimum number of cycles.

(4) Are they sure it’s the Xeloda? The Oxaliplatin can cause lots of effects, and over time. I’d want to understand why they think it’s the 5-FU/Xeloda.

Just questions you may want to ask, of course. Hope this stuff makes sense, happy to explain my thinking further if it would be helpful to do so. Good luck and I hope you feel better soon.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Sonofafighter
Posts: 13
Joined: Sun Nov 17, 2019 1:19 am

Re: Not tolerating Xeloda. Are there any options?

Postby Sonofafighter » Thu Aug 06, 2020 2:01 pm

Your doctor knows best but i can share my experiences.

My Father had the same trouble after 3 cycles. Eventually spent 12 days admitted in the hospital due to high grade diarrhea and nausea - hooked up to IVs and symptoms managed with Immodium and anti-emetics (No vomit as he couldn't even keep water down).

He had Xeloda prior during his pre-surgery Radiation for 5 weeks, and first 2 cycles were OK, just the usual hoarseness of throat and hand-foot symptoms. I was told by some smart care nurses and doctors at the ward that some people don't react well over time and it was difficult to see him go through it - He must have lost 15 KGs in the period between Round 2 till he was discharged.

After a Chemo break for a month and a half to put on some weight and recharge, the doctor switched him to Folfox. One of them was via an infusion pump, for which they had a PICC line (sorry for spelling) placed in his main artery. Used to run for ~40 hours. That went well and he completed his remaining rounds with adjustments. I think he had 3 left, but eventually they did 5 or 6 on the new regimen. I think the take home pump was 5FU, not 100% sure as some time has passed.

Few things retrospectively that was told to us :

1)Whiile Xeloda does have toxicity on a minority of patients, taking them on an empty stomach (which he did as he was worried breaking the cycle was worse than the effects it had on him) is really really bad. Xeloda must must be had as prescribed - with food, there is a window to take it in, please refer to the box or the doctors instructions. I dont want to put out anything misleading but there definitely is a prescribed manner. On an empty stomach GI issues are common.

2) He had an ileostomy bag at the time, that was filling up rapidly due to the Xeloda toxicity, but chemo brain, and all, he didnt realize his problem wasnt the nausea, it was the diarrhea and he was severely dehydrated. If this was the symptom/complaint presented to the care nurse over the phone (number of movements.day) they would have told him to stop the pills and come in ASAP.

I hope you find a way through and the next course is easier on you and kicks the eff out of any C cells you may have. Lots of prayers

Tristen7171
Posts: 3
Joined: Fri Jul 10, 2020 11:20 pm

Re: Not tolerating Xeloda. Are there any options?

Postby Tristen7171 » Thu Aug 06, 2020 5:22 pm

Are you sure it's the Zeloda that's causing it? I had way more side effects from the oxillyplaton. I was prescribed something called Syndros for my nausea that really helped me.

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: Not tolerating Xeloda. Are there any options?

Postby Lee » Thu Aug 06, 2020 6:41 pm

Yes FOLFOX with a 5FU pump for about 2 days.

This was about 16 yrs ago when FOLFOX was still experimental, I got 12 full cycles with no reductions. I was able to do it, but I will be honest, the side effects are accumulative. By the 12th cycle, the day after disconnect, I was lucky if I could get myself off the sofa, go to the freezer, then microwave and put dinner on the table.

Three things I would highly recommend.

1) A day or 2 prior to infusion, drink a TONS of liquid, you will lose it while on chemo. Better to be prepared vs dealing with dehydration.

2) Eat something prior to infusion. Me personally, I would drive by BurgerKIng and get one of there egg cheese breakfast sandwich.

3) Eat through the day (snacking) vs 3 meals a day. I found food in my stomach kept nausea at bay. Don't worry about eating healthy while on chemo. Junk food is better than an empty stomach. Eat what sounds/feels good.

Good luck, I hope this help.

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 - 16 years and counting!

weisssoccermom
Posts: 5974
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Not tolerating Xeloda. Are there any options?

Postby weisssoccermom » Thu Aug 06, 2020 9:05 pm

If you think its the Xeloda, here are some questions you should answer.

1. When are you taking the pills? You should NEVER take Xeloda on an empty stomach nor should you take it with a meal. You SHOULD take it within 30 mins after finishing a meal. You can take it anywhere from 1 min to 30 mins AFTER you finish a meal. If you aren't doing that, give it a try. You might be surprised at the difference.

2. How much grains or grain related products are you eating? This is super important...especially if you live in the USA or Canada. Here's the reason...when a patient takes FOLFOX, a drug called leucovoran is also given. Leucovoran is not chemo but rather a derivative of folic acid. Its given with 5FU...because without it, the 5FU doesn't remain in the patient's system very long...it basically runs through it. The 5FU is the drug in the combo that basically does all the work. So what does this have to do with Xeloda?? Xeloda is converted in the liver to 5FU. Since the patient takes pulks twice a day, there is NO need for leucovoran....the twice daily dosing keeps a fairly constant level of 5FU in the patient's body. If the patient were to be given leucovoran it would allow the 5FU in the body to build up...causing serious gastro upsets. Here cimes the applicable part. In the USA/Canada, our grains are fortified with FOLIC ACID...the same thing that leucovoran is a derivative of. Things like pasta, crackers, bread, cereal, etc all have high levels of folic acid. If a patient is eating a lot of carbs, its going to have the effect of keeping the levels of 5FU HIGH in the body. That sounds good but it causes big time gastro side effects.

That's not to say you can't have some pasta or crackers...but one must be cognizant of the fact that most everything made with flour has been fortified with folic acid. In addition, you shouldn't be taking a multivitamin while on chemo...for exactly the same reason. I have yet to find a multivitamin that doesn't have folic acid in it.

Certainly taking any chemo can and will aggravate many a patient's stomachs. IF you are taking the pills at the wrong time and/or are eating a lit of carbs and taking a multivitamin, consider making some simple changes and see if that helps.
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

User avatar
CRguy
Posts: 10264
Joined: Sun Feb 10, 2008 6:00 pm

Re: Not tolerating Xeloda. Are there any options?

Postby CRguy » Thu Aug 06, 2020 11:29 pm

Just a quick add-on here for you as there IS good feedback already to your question.

1. I had Xeloda by itself twice and had only minor problems

2. I had FOLFOX and had more issues with the Oxaliplatin than with the 5-FU or Xeloda earlier

3. Yes you need to monitor / avoid folic acid additives

4. TIMING for taking Xeloda after food IS critical !!!!

5. did they test you for DPD deficiency ????? Dihydropyrimidine dehydrogenase deficiency
People with dihydropyrimidine dehydrogenase deficiency, including those who otherwise exhibit no symptoms, are vulnerable to severe, potentially life-threatening toxic reactions to certain drugs called fluoropyrimidines that are used to treat cancer. Common examples of these drugs are 5-fluorouracil and capecitabine. These drugs are not broken down efficiently by people with dihydropyrimidine dehydrogenase deficiency and build up to toxic levels in the body (fluoropyrimidine toxicity). Severe inflammation and ulceration of the lining of the gastrointestinal tract (mucositis) may occur, which can lead to signs and symptoms including mouth sores, abdominal pain, bleeding, nausea, vomiting, and diarrhea. Fluoropyrimidine toxicity may also lead to low numbers of white blood cells (neutropenia), which increases the risk of infections. It can also be associated with low numbers of platelets in the blood (thrombocytopenia), which impairs blood clotting and may lead to abnormal bleeding (hemorrhage). Redness, swelling, numbness, and peeling of the skin on the palms and soles (hand-foot syndrome); shortness of breath; and hair loss may also occur.

KEEP pushing the Docs until you get an answer that helps YOU !!!!

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Not tolerating Xeloda. Are there any options?

Postby Ulendon » Sat Aug 08, 2020 3:10 pm

Thank you guys.

I am (well, was) taking the pills as directed. Within 30 minutes after a meal. The doctor went with the pills to reduce my possible covid exposure. Pills I only go in every 3 weeks versus every 2 for folfox. I'm sure it's the Xeloda as it gets worse and worse the farther out from the oxaliplatin we get and when I stop taking the pills I get better.

I DO eat a lot of carbs right now. Eating is really hard and things like toast or pasta are the easiest.

I'll ask about the DPD deficiency. It hasn't been mentioned. I am not taking any supplements during chemo.

The Xeloda during radiation prior to the surgery was bearable but now it is not. I'm terrified to try the Folfox now because what if I react the same but can't stop taking it? These last two cycles, I've really had moments where I thought I was going to die or should because it was so miserable. I'm alone and it's hard to make sensible choices at 3 am when you're that ill.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

roadrunner
Posts: 91
Joined: Sun Jan 12, 2020 8:46 pm

Re: Not tolerating Xeloda. Are there any options?

Postby roadrunner » Sun Aug 09, 2020 3:40 pm

It sounds like your oncologist is considering options; I hope he or she comes up with something that allows you to get the treatment you need without too much more difficulty. It may be worth considering how many cycles you’ve completed — the numbers aren’t magic, some require 12 cycles, some 8, and some evidence appears to indicate that 6 may be sufficient, at least in some circumstances. Since you seem to be at a point where the current approach isn’t allowing you to complete a cycle (e.g. 5/14 days of Xeloda), it seems like a different approach may be called for, and consideration of how much you’ve done/how much is optimal or minimum seems appropriate.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

weisssoccermom
Posts: 5974
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Not tolerating Xeloda. Are there any options?

Postby weisssoccermom » Sun Aug 09, 2020 3:49 pm

Here is another suggestion that has worked for some people.
Some doctors will use a 7 day on/7 day off Xeloda dosing. It may help you better tolerate the pills but first please try and reduce your carb intake. That may significantly help. Talk with your doctor about a different cycle....it's not a written in stone that it must be 14 on/7 off.
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

margiej
Posts: 104
Joined: Sat Apr 14, 2018 8:46 am

Re: Not tolerating Xeloda. Are there any options?

Postby margiej » Sun Aug 09, 2020 8:03 pm

If you buy organic bread, cereal and pasta, those aren't fortified with folic acid. I didn't know any of that when I was on Capox and I was so very, very sick like you. I am so sorry you are going through this. If you can get some cannabis in any form it might help. Ativan helps nausea and sleeping some too. Hope you find relief soon.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

User avatar
beach sunrise
Posts: 359
Joined: Thu Mar 05, 2020 7:14 pm

Re: Not tolerating Xeloda. Are there any options?

Postby beach sunrise » Sun Aug 09, 2020 9:33 pm

Yes, folic acid is terrible so definitely watch the intake. I was sick as a dog when first starting FOLFOX (I had already stopped eating food with folic acid months before)...luckily one of my my docs ordered tests and it came back that I had gluten sensitivity. So, gluten was stopped immediately from my diet and the sick folfox symptoms went away and my thyroid panels improved.
I hope you figure out what is making you so sick. Please let us know how you are doing!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Readerokie
Posts: 6
Joined: Wed May 13, 2020 6:12 am

Re: Not tolerating Xeloda. Are there any options?

Postby Readerokie » Sat Aug 15, 2020 9:21 pm

I'm so sorry. My husband just finished round 3 of CAPOX and this is what's helping him:

Eating something easy to get down (for him it's a cinnamon roll) plus nausea meds 30 min before pills.

Most nausea meds including Zofran weren't helping him. He's kept 1 of them (Chloro- something?) but has stopped taking most of them.

The BIGGEST thing that's getting him through is medical marijuana, specifically gummy edibles. He prefers Buffalo Roze. He also smokes a little throughout the day to deal with nausea spikes.
5/20 Urgent surgery, blockage.Tumor, upper left colon. 9cc. G2. Adenocarcinoma. Clear margins.
5/20 Dx Stage 3b. T3N1aM0. 1/15 lymph nodes.
6/20 Began 4x CAPOX

NHMike
Posts: 2508
Joined: Fri Jul 21, 2017 3:43 am

Re: Not tolerating Xeloda. Are there any options?

Postby NHMike » Sun Aug 16, 2020 9:52 am

I had minimal side-effects with Xeloda and had just about all of them with Oxaliplatin and I have the impression that the vast majority have a tougher time with the latter. You could try the pump instead of the pills as I've heard that that's tolerated better. Your oncologist should suggest that option if it's a better option.

The pills are really convenient though.
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; 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, 2/12 1.2
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
2/19: Clean CT

Rikimaroo
Posts: 333
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Not tolerating Xeloda. Are there any options?

Postby Rikimaroo » Mon Aug 17, 2020 12:44 pm

I am doing the Xeloda/Avastin maintenance starting this Wedensday. I never had an issue with Xeloda during ChemoRadiation....,only hand foot syndrome, which I think means hands and feet get very dark???

I think Pump 5FU is worse, infusion immediate effect. FOLFIRI is so tough, FOLFOX is so tough, but FOLFIRI is more more more tough. I think the pills are easier, but every human is different. I am getting the 7 days on 7 days off Xeloda and 3 weeks Avastin.

I am hoping this will keep any cancer at bay and maybe push me into remission.

Good LUck!!
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 2 guests