New to Board - Xeloda and Side Effects

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JHC
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Joined: Sat Feb 24, 2018 1:03 pm

New to Board - Xeloda and Side Effects

Postby JHC » Tue Feb 27, 2018 1:33 pm

I am new to posting on the board. Thanks to those who have posted here and provided invaluable information. It has been a great resource since I started down this road.

Long story short - After feeling fatigued and lousy for more than a couple years, but never being able to get to the bottom of it with my doctors, I ended up in the ER in October of last year due to extensive bleeding and pain. Took about a month for them to fit in colonoscopy, and a mass was discovered. I had a rescission to remove a sigmoid colon adenocarcinoma at the beginning of December, 2017. Surgery ostensibly went well and I began Xeloda chemo in the middle of January to "mop up" whatever might be lingering behind.

I am wondering about the side effects anyone here has felt on chemo (Xeloda) and after surgery. Specifically, insomnia, loss of metal acuity and anxiety. I read some posts where people talk about the hand and foot syndrome, thinning hair, nausea. I have started to feel those effects here in the third two-week cycle.

But the things that have been bothering me the most are side effects that the doctors seem to shrug aside; an unnatural fatigue and mental haze that seems to get worse with each passing week. And despite feeling fatigued most of the day and trying to fight it with walks and light exercise, I can't sleep more than an hour or two a night. The doctors seemed to gloss over this as "usual anxiety" that comes with cancer, but I had bouts with insomnia before cancer, and this is substantially worse. Moreover, ever since the surgery, and especially since the start of chemo, I am just not mentally as sharp as I think I was prior. I find it incredibly disconcerting to drift off in the middle of conversations or forget what I was doing.

Anyone else have similar experiences, and if so, did it go away when the chemo ended?
10/2/17 ER due to Bleeding
11/1/17 Colonoscopy
11/4/17 DX CC Adenocarcinoma
12/1/17 Rescission 5cm x 5.5 cm x 1cm
T3N0M0 Stage II
1/15/18 Chemo starts -Xeloda 4000mg/day

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peanut_8
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Location: Capital of Texas

Re: New to Board - Xeloda and Side Effects

Postby peanut_8 » Tue Feb 27, 2018 4:13 pm

Hi JNC,
Sorry hear of your diagnosis. I'm a fellow stage 2 patient who relied on Xeloda for adjuvant treatment. I'm concerned that your physicians are not taking your insomnia and anxiety seriously. During treatment I took Ativan as needed for anxiety and nausea. I also had the effect of causing drowsiness. Seems like something like that could really help you out. Don't know the best way to go about broaching this with your physician, especially since they seem to be ignoring you. Maybe a fellow Colon Clubber has suggestions.

Sounds like you're already walking and exercising as much as tolerated. Good for you!. I found that to be one of the best was to cope. Another suggestion is to drink a lot of water to flush the bad crap out of your system. Lots and lots of water, like 3-4 liters a day.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

rp1954
Posts: 1318
Joined: Mon Jun 13, 2011 1:13 am

Re: New to Board - Xeloda and Side Effects

Postby rp1954 » Tue Feb 27, 2018 4:53 pm

5FU interacts with folic acid in common multivitamins and fortified foods, like bread. We ruthlessly eliminated folic acid, added 2tsb liver(spread) for natural folates and other nutrients for another oral 5FU drug. Then increased 5FU chemo 33-50% with fewer side effects.

Glutamine, IV vitamin C and PSK can offset many chemo effects; melatonin can aid sleep and immunity. Other supplements can help side effects and improve cancer inhibition too.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Lee
Posts: 5557
Joined: Sun Apr 16, 2006 4:09 pm

Re: New to Board - Xeloda and Side Effects

Postby Lee » Tue Feb 27, 2018 5:30 pm

I'm sorry your doctors are not taking you seriously, maybe get a bit vocal. One of my neighbors is a Vietnam Vet who was suffering from PTST. He was being ignored at the VA hospital until he threw a MAJOR hissy fit in the waiting area. That got the attention of a psychiatrist who was in his office. That psychiatrist hauled my neighbor into his office and he started getting the medical attention he needed. I'm not advising get that vocal, but express your frustration.

I take Melatonin to help me sleep at night.

Good luck,

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
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Re: New to Board - Xeloda and Side Effects

Postby juliej » Tue Feb 27, 2018 7:53 pm

I second the recommendation of Ativan. Ask your onc for a prescription. It's a "two-fer" drug -- it helps the nausea AND the anxiety. Take a dose right before bedtime and it will also help you sleep.

Getting diagnosed with cancer is a life-changing event. Sometimes the mind has trouble processing what's going on. Add in the side-effects of chemo and suddenly you feel like you're in a mental fog all the time! The term "chemo brain" is used to describe this state. I know patients who've taken methylphenidate for chemo brain. It's a stimulant drug primarily used for ADHD and chronic fatigue syndrome, but it works for some cancer patients. You might talk to you onc about it.

I was a very active person before my diagnosis so I used exercise to increase my mental alertness. It helped some (more oxygen to the brain is always a good thing!) but the biggest effect was from the endorphins it produced. Endorphins are the body's natural "feel good" drug. They stimulate feelings of well-being, help you feel focused, and diminish the negative effects of stress.

You say you're doing some light exercise now, but I suspect your lack of sleep is hindering your efforts in this direction. Use the Ativan and see if you can get more sleep. If it doesn't work for you, ask your onc about trying Xanax or Ambien. It's amazing how many problems poor sleep quality can cause -- fatigue, depression, lack of concentration, memory issues, stress, etc. Get that problem under control and I think you'll see an improvement in your mental alertness too.

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 5/11/2018, CEA<1

teachpdx
Posts: 608
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Location: Portland, OR

Re: New to Board - Xeloda and Side Effects

Postby teachpdx » Tue Feb 27, 2018 9:47 pm

juliej wrote:I second the recommendation of Ativan. Ask your onc for a prescription. It's a "two-fer" drug -- it helps the nausea AND the anxiety. Take a dose right before bedtime and it will also help you sleep.

Getting diagnosed with cancer is a life-changing event. Sometimes the mind has trouble processing what's going on. Add in the side-effects of chemo and suddenly you feel like you're in a mental fog all the time! The term "chemo brain" is used to describe this state. I know patients who've taken methylphenidate for chemo brain. It's a stimulant drug primarily used for ADHD and chronic fatigue syndrome, but it works for some cancer patients. You might talk to you onc about it.

I was a very active person before my diagnosis so I used exercise to increase my mental alertness. It helped some (more oxygen to the brain is always a good thing!) but the biggest effect was from the endorphins it produced. Endorphins are the body's natural "feel good" drug. They stimulate feelings of well-being, help you feel focused, and diminish the negative effects of stress.

You say you're doing some light exercise now, but I suspect your lack of sleep is hindering your efforts in this direction. Use the Ativan and see if you can get more sleep. If it doesn't work for you, ask your onc about trying Xanax or Ambien. It's amazing how many problems poor sleep quality can cause -- fatigue, depression, lack of concentration, memory issues, stress, etc. Get that problem under control and I think you'll see an improvement in your mental alertness too.

Hope this helps!
Juliej


I second everything she said. Well said Juliej.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

NHMike
Posts: 1361
Joined: Fri Jul 21, 2017 3:43 am

Re: New to Board - Xeloda and Side Effects

Postby NHMike » Wed Feb 28, 2018 9:39 am

I was on 3,500 Xeloda + Radiation for Neo-Adjuvant Chemorad (before surgery), and I tolerated it well. It did a number on my red and white blood cell counts but I could work, run and play tennis through it.

I'm on Adjuvant right now with 4,000 mg and the symptoms that you mentioned. Add diarrhea into the bag as well. I'm waiting for an Oxaliplatin infusion and asked to reduce the dose from 80% to 75%. I also mentioned the arthritic feelings in my hands and we agreed to reduce the Xeloda to 3,500 mg. If you are having a really hard time, ask about reducing the dosage. I was in really bad shape after the second cycle of Oxaliplatin and we took an extra week off and lowered the dosage to 80% for the third and it was similar to the first (which was acceptable). The weather here has improved which should help a lot.

Doctors may be reluctant to drop the dosage but it's actually common if the patient can't tolerate the toxicity. It is not an exact science and research may be pointing to fewer cycles.

I fell down the stairs 10 days ago due to tiredness and rushing to empty the bag and I had an accident yesterday with a microwave oven (cut). So the affects on your brain can cause other problems as well and I don't think that you want to walk or drive like a zombie. Good luck with talking to your oncologist.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

JHC
Posts: 3
Joined: Sat Feb 24, 2018 1:03 pm

Re: New to Board - Xeloda and Side Effects

Postby JHC » Sat Mar 03, 2018 7:53 pm

juliej wrote:I second the recommendation of Ativan. Ask your onc for a prescription. It's a "two-fer" drug -- it helps the nausea AND the anxiety. Take a dose right before bedtime and it will also help you sleep.

Getting diagnosed with cancer is a life-changing event. Sometimes the mind has trouble processing what's going on. Add in the side-effects of chemo and suddenly you feel like you're in a mental fog all the time! The term "chemo brain" is used to describe this state. I know patients who've taken methylphenidate for chemo brain. It's a stimulant drug primarily used for ADHD and chronic fatigue syndrome, but it works for some cancer patients. You might talk to you onc about it.

I was a very active person before my diagnosis so I used exercise to increase my mental alertness. It helped some (more oxygen to the brain is always a good thing!) but the biggest effect was from the endorphins it produced. Endorphins are the body's natural "feel good" drug. They stimulate feelings of well-being, help you feel focused, and diminish the negative effects of stress.

You say you're doing some light exercise now, but I suspect your lack of sleep is hindering your efforts in this direction. Use the Ativan and see if you can get more sleep. If it doesn't work for you, ask your onc about trying Xanax or Ambien. It's amazing how many problems poor sleep quality can cause -- fatigue, depression, lack of concentration, memory issues, stress, etc. Get that problem under control and I think you'll see an improvement in your mental alertness too.

Hope this helps!
Juliej

Thanks very much for the advice. My Onc suggested Ambien for sleep and if that doesn't help, we will try something else. Good to know that "chemo brain" is a legitimate issue - as you said, this is a "life changing event" and there has been an awful lot to process. Take care!
10/2/17 ER due to Bleeding
11/1/17 Colonoscopy
11/4/17 DX CC Adenocarcinoma
12/1/17 Rescission 5cm x 5.5 cm x 1cm
T3N0M0 Stage II
1/15/18 Chemo starts -Xeloda 4000mg/day

JHC
Posts: 3
Joined: Sat Feb 24, 2018 1:03 pm

Re: New to Board - Xeloda and Side Effects

Postby JHC » Sat Mar 03, 2018 8:01 pm

Thanks to everyone for your advice! It has been very helpful and also reassuring.
10/2/17 ER due to Bleeding
11/1/17 Colonoscopy
11/4/17 DX CC Adenocarcinoma
12/1/17 Rescission 5cm x 5.5 cm x 1cm
T3N0M0 Stage II
1/15/18 Chemo starts -Xeloda 4000mg/day

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New to Board - Xeloda and Side Effects

Postby Caat55 » Wed Mar 07, 2018 11:48 pm

Just reading my chemo teaching pages from hospital today. It says Folic Acid may interact with Xeloda. I have been going through cupboards, reading labels and stocking up on flour, pasta, cereals that don't have folate. Pharmacist from insurance company gave me links to some studies about it working against chemo. Will follow up and share them.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

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O Stoma Mia
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Location: Nitu Island, North Sulawesi

Re: New to Board - Xeloda and Side Effects

Postby O Stoma Mia » Thu Mar 08, 2018 3:26 am

Caat55 wrote:... I have been going through cupboards, reading labels ...

Don't forget to read the labels of any multi-vitamins you are taking. This is because they may contain Folic Acid.

Vitamin B9 - Folic Acid
https://www.umm.edu/health/medical/altmed/supplement/vitamin-b9-folic-acid

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Robino1
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Re: New to Board - Xeloda and Side Effects

Postby Robino1 » Thu Mar 08, 2018 8:29 am

I've just recently discovered that folic acid can hinder chemo. I'm trying to cut it out but damn! There are sooooo many things that have added it to their product!

I have not found a bread that doesn't have it in there. Please share if you have found one. Minute rice contains folic acid.

I've stopped my multi vitamin because of this.

Pasta, need to look at those too. I have several in my pantry.

Such the maze we have to navigate on this journey!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New to Board - Xeloda and Side Effects

Postby Caat55 » Thu Mar 08, 2018 2:12 pm

Real brands of pasta from Europe doesn't have it, not the brands the sound Italian but really made there. I am going to make my own bread, gives me an excuse to feel the house with amazing scents, spoil my husband. Most gluten free products don't add folic acid. Corn meal has it though. But there has to be an organic product. I got Bobs Redmill organic flour. Natural sources from food sources are okay, it's just the added folic acid or folate that bad.
I will let you know bread name, going to market today.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

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Robino1
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Facebook Username: Robin.lawthers
Location: Florida

Re: New to Board - Xeloda and Side Effects

Postby Robino1 » Thu Mar 08, 2018 2:16 pm

Caat55 wrote:Real brands of pasta from Europe doesn't have it, not the brands the sound Italian but really made there. I am going to make my own bread, gives me an excuse to feel the house with amazing scents, spoil my husband. Most gluten free products don't add folic acid. Corn meal has it though. But there has to be an organic product. I got Bobs Redmill organic flour. Natural sources from food sources are okay, it's just the added folic acid or folate that bad.
I will let you know bread name, going to market today.



Thank you, I appreciate it.

All purpose flour has folic acid added. Might need to start making our own. Too bad we got rid of the bread maker years ago. Time to start shopping again :lol:
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New to Board - Xeloda and Side Effects

Postby Caat55 » Thu Mar 08, 2018 2:19 pm

I got Bob's Red Mill unbleached white all purpose organic flour, no folate. Probably find a bread maker at thrift store.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18


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