Adverse reaction to capecitabine?

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dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Adverse reaction to capecitabine?

Postby dauofcamom » Thu Jun 07, 2018 9:33 pm

My mom finished her first round of Xelox regime last Wednesday. On the last three or so days of the pills she really had a hard time eating or drinking anything. Then on Sunday she was having abdominal pains that were severe enough for the on-call oncologist to tell her to go to urgent care. Urgent Care sent her to the ER and she's been in the hospital since then. Her blood work and vitals are good and she had two CT scans that showed mild inflammation in her small intestine but nothing else.

Her oncologist thinks it's an adverse reaction to the capecitabine. It's been five days and my mom is still in severe abdominal pain and they are keeping her on pain meds. My mom is very sleepy and can hardly stay awake. I spoke with her this morning and she was talking nonsense. She is very confused. I'm not sure if it's the pain meds or if something else is going on. She had a CT scan of her head this afternoon but we don't know the results yet. She was dehydrated when she was admitted and she is very weak. I know they are keeping her hydrated and are aware she hasn't eaten.

Does anyone have any idea what might be going on?? I'm getting really worried. I live on the opposite coast and I flew out and have been with her for two months, since her diagnosis. I just came back home Friday and then this happened Sunday. I am worried sick. I have been in limited contact with her treating physician at the hospital and her oncology nurse because it's so hard to get a hold of them. All I can do is leave a message and wait for someone to call me back. I do know the two doctors are talking but it's hard to get any solid information from anyone. Does anyone know how long this might last?

My brother and aunt and I have been talking and not sure if mom should even continue the chemo at this point. My mom already told my brother she doesn't want to do it anymore. We just don't know what to do. I have never felt so helpless.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

User avatar
O Stoma Mia
Posts: 1364
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Adverse reaction to capecitabine?

Postby O Stoma Mia » Fri Jun 08, 2018 7:23 am

dauofcamom wrote:...
Does anyone have any idea what might be going on??

It might be DPD deficiency. Has she been tested for DPD?

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43901&p=314059#p314059
.
http://www.dpd-deficiency.com

NHMike
Posts: 1558
Joined: Fri Jul 21, 2017 3:43 am

Re: Adverse reaction to capecitabine?

Postby NHMike » Fri Jun 08, 2018 9:18 am

O Stoma Mia wrote:
dauofcamom wrote:...
Does anyone have any idea what might be going on??

It might be DPD deficiency. Has she been tested for DPD?

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43901&p=314059#p314059
.
http://www.dpd-deficiency.com


My oncologist mentioned that some people have a genetic condition where their body can't metabolize capecitabine and that they always test for it before giving it. Giving it without the test can be very dangerous. Ideally the original poster could look at the online hospital portal to verify that the test was done. Capecitabine does have side-effects but putting a person in the hospital shouldn't be one of the normal ones.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: Adverse reaction to capecitabine?

Postby dauofcamom » Fri Jun 08, 2018 10:03 am

Thank you for this info. I’m trying not to panic having read about the dpd. I am sending a note to her onc right now.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Adverse reaction to capecitabine?

Postby emkaye » Fri Jun 08, 2018 1:54 pm

I found some more resources on this with treatment recommendations for those who are DPD Deficient:

https://www.ncbi.nlm.nih.gov/books/NBK395610/
https://fightcolorectalcancer.org/blog/ ... eficiency/

Prayers to you and your mom!

SteveNZ
Posts: 125
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Adverse reaction to capecitabine?

Postby SteveNZ » Fri Jun 08, 2018 10:05 pm

YUK...!?
This has alarmed me a bit as I had similar reactions to Xeloda and then had the TIA.
I am no Dr but am being careful as especially the chest pains, sweating away at night, breathing hardship (nothing drastic but an ever present extra force required) were real. And even now, for quite a while after the chemo the chest/breathing pains are real. The good news is that my heart is in great shape as they assumed this was causing the chest pains and thoroughly checked me out.

But I am epileptic so a few of the other symptoms (tingling, sometimes shaking, memory loss) are quite normal for my medication.

Thanks for introducing this topic. My chemo specialist took me off Xeloda as soon as he heard the word 'chest pain'.
Again I need to advise I am no Doctor but this topic has given me the right questions to ask.

PS- Interestingly enough I have just read that DPD (the enzymes involved/lacking) are also linked to some forms of epilepsy. Enough for me to ask questions?
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

NHMike
Posts: 1558
Joined: Fri Jul 21, 2017 3:43 am

Re: Adverse reaction to capecitabine?

Postby NHMike » Fri Jun 08, 2018 10:15 pm

SteveNZ wrote:YUK...!?
This has alarmed me a bit as I had similar reactions to Xeloda and then had the TIA.
I am no Dr but am being careful as especially the chest pains, sweating away at night, breathing hardship (nothing drastic but an ever present extra force required) were real. And even now, for quite a while after the chemo the chest/breathing pains are real. The good news is that my heart is in great shape as they assumed this was causing the chest pains and thoroughly checked me out.

But I am epileptic so a few of the other symptoms (tingling, sometimes shaking, memory loss) are quite normal for my medication.

Thanks for introducing this topic. My chemo specialist took me off Xeloda as soon as he heard the word 'chest pain'.
Again I need to advise I am no Doctor but this topic has given me the right questions to ask.

PS- Interestingly enough I have just read that DPD (the enzymes involved/lacking) are also linked to some forms of epilepsy. Enough for me to ask questions?


I would be shocked if a doctor didn't order this test as it's likely standard of care as it can result in patient death.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Stewsbetty
Posts: 124
Joined: Thu Jul 14, 2016 7:08 am

Re: Adverse reaction to capecitabine?

Postby Stewsbetty » Sat Jun 09, 2018 7:42 am

dauofcamom wrote:My mom finished her first round of Xelox regime last Wednesday. On the last three or so days of the pills she really had a hard time eating or drinking anything. Then on Sunday she was having abdominal pains that were severe enough for the on-call oncologist to tell her to go to urgent care. Urgent Care sent her to the ER and she's been in the hospital since then. Her blood work and vitals are good and she had two CT scans that showed mild inflammation in her small intestine but nothing else.

Her oncologist thinks it's an adverse reaction to the capecitabine. It's been five days and my mom is still in severe abdominal pain and they are keeping her on pain meds. My mom is very sleepy and can hardly stay awake. I spoke with her this morning and she was talking nonsense. She is very confused. I'm not sure if it's the pain meds or if something else is going on. She had a CT scan of her head this afternoon but we don't know the results yet. She was dehydrated when she was admitted and she is very weak. I know they are keeping her hydrated and are aware she hasn't eaten.

Does anyone have any idea what might be going on?? I'm getting really worried. I live on the opposite coast and I flew out and have been with her for two months, since her diagnosis. I just came back home Friday and then this happened Sunday. I am worried sick. I have been in limited contact with her treating physician at the hospital and her oncology nurse because it's so hard to get a hold of them. All I can do is leave a message and wait for someone to call me back. I do know the two doctors are talking but it's hard to get any solid information from anyone. Does anyone know how long this might last?

My brother and aunt and I have been talking and not sure if mom should even continue the chemo at this point. My mom already told my brother she doesn't want to do it anymore. We just don't know what to do. I have never felt so helpless.


Hello, sorry your mom is doing is poorly. I ended up hospitalized on 2nd round of chemo. Constant nausea and diarrhea dehydrated me. I was unable to eat for the week. My oncologist reduced my dose and we resumed about a month later at 1/2 dose and eventually made it up to 3/4 dose. These were much easier to tolerate.

But here is a question for you, any reason why they aren’t using immunotherapy with her? I noticed she is MSI -h. Chemo was not effective against my cancer but the immunotherapy has been taking it down.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots

Stewsbetty
Posts: 124
Joined: Thu Jul 14, 2016 7:08 am

Re: Adverse reaction to capecitabine?

Postby Stewsbetty » Sat Jun 09, 2018 7:43 am

Ok, just went back and looked at your dog. I guess because she is stage 3. If she is unable to continue chemo I would ask the doc about doing Keytruda or Opdivo.
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots

SteveNZ
Posts: 125
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Adverse reaction to capecitabine?

Postby SteveNZ » Sat Jun 09, 2018 4:04 pm


I would be shocked if a doctor didn't order this test as it's likely standard of care as it can result in patient death.

Thanks for that.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

LittleG
Posts: 8
Joined: Tue May 08, 2018 4:25 am

Re: Adverse reaction to capecitabine?

Postby LittleG » Sun Jun 10, 2018 1:11 am

dauofcamom wrote:My mom finished her first round of Xelox regime last Wednesday. On the last three or so days of the pills she really had a hard time eating or drinking anything. Then on Sunday she was having abdominal pains that were severe enough for the on-call oncologist to tell her to go to urgent care. Urgent Care sent her to the ER and she's been in the hospital since then. Her blood work and vitals are good and she had two CT scans that showed mild inflammation in her small intestine but nothing else.

Her oncologist thinks it's an adverse reaction to the capecitabine. It's been five days and my mom is still in severe abdominal pain and they are keeping her on pain meds. My mom is very sleepy and can hardly stay awake. I spoke with her this morning and she was talking nonsense. She is very confused. I'm not sure if it's the pain meds or if something else is going on. She had a CT scan of her head this afternoon but we don't know the results yet. She was dehydrated when she was admitted and she is very weak. I know they are keeping her hydrated and are aware she hasn't eaten.

Does anyone have any idea what might be going on?? I'm getting really worried. I live on the opposite coast and I flew out and have been with her for two months, since her diagnosis. I just came back home Friday and then this happened Sunday. I am worried sick. I have been in limited contact with her treating physician at the hospital and her oncology nurse because it's so hard to get a hold of them. All I can do is leave a message and wait for someone to call me back. I do know the two doctors are talking but it's hard to get any solid information from anyone. Does anyone know how long this might last?

My brother and aunt and I have been talking and not sure if mom should even continue the chemo at this point. My mom already told my brother she doesn't want to do it anymore. We just don't know what to do. I have never felt so helpless.


I'm so sorry you and your mother have this to navigate. I'm no expert but I had severe cramping when I took xeloda during chemorads and after a very difficult week it ended up being a parasite GI bug. If the pills are too much to take, you could always try Folfox instead. The 5FU is delivered with the oxi then connected for 48hrs for an infusion and the cycle is 2 weeks. So once the oxi crash has come and gone, you get left with at least a week of feeling more human. I went for this option as it meant I didn't have to deal with the pills when I felt like rubbish and only had 3 days in a cycle of dealing with infusions.

Also worth making sure your mother's doctors know how she is feeling mentally about it, they maybe able to adjust other meds to help too.

henry123
Posts: 120
Joined: Sun Oct 08, 2017 3:25 am

Re: Adverse reaction to capecitabine?

Postby henry123 » Sun Jun 10, 2018 9:31 am

I second what Beth ( Stewsbetty ) has written.
I had a cardiac incident on first infusion of 5FU and was almost gone . Then I was shifted to xeloda ( which is 5fu in tablet form) .
Didn't do a bit for me except 6 months of pure suffering and misery. Besides disease progressed from stage 3 to stage 4.
This was followed by avastin, iri , regrofenib. In my case only opdivo worked .
I am msi-high and strongly recommend moving to immunotherapy at earliest opportunity for all msi-high patients.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: Adverse reaction to capecitabine?

Postby dauofcamom » Mon Jun 11, 2018 5:48 am

Thank you everyone for sharing your experiences and suggestions. It has been a roller coaster this week. One day my mom feels better and the next day she's just ready to give up on it all.

It's day 8 and she's still in the hospital. Her abdominal pain has subsided but she's had diarrhea for the past four days. She's had several "accidents" in the hospital and she is so demoralized, weak and sad. I thought she was doing better day before yesterday because she sounded good on the phone and told me she ate breakfast and lunch. I found out yesterday morning from my aunt that she's not telling me the truth. She's still not eating. But then when I spoke to my brother yesterday afternoon, he said she was in better spirits and went for a walk with my dad and ate half a banana. I spoke to my mom last night and we had a good cry over the phone. My mom is tired of being sick (so understandable!) and says she absolutely "isn't going to do this any more," referring to chemo. She said she's trying to eat but afraid because of the diarrhea. The hospital finally gave her some immodium yesterday, so hopefully that will help and she will start eating and getting her strength back.

I cannot imagine what my mom is going through but this is so hard on everyone who loves her. My aunt spoke to the nurses yesterday and they are going to send a social worker to room today. Hopefully that will help my mom. l

Following were some questions in the email I sent to her onc last week and his response:
...I read a couple abstracts about severe ileitis with capecitabine and it appears rare. I have a few questions for you:
1. Should she be on antibiotics? I believe Dr. Paul started her on some and then stopped.
2. Should she even be on capecitabine since she is MSI?
3. What are her alternatives?
4. What are the next steps?

Doctor's response:
no she doesn't need antibiotics since her bowel inflammation is not infectious
the inflammation of the bowel is not a rare side effect of the capecitabine, but the severity of her inflammation is not typical.
the msi would argue against the benefit of chemotherapy if she had stage II disease, but not satge III
her alternatives would be dose reduction of the capecitatbine, proceeding with oxaliplatin alone, or stopping further chemo altogether
she needs to recover (best medicine at this point is time, and motivation). She will not magically get better unless she works for it including eating even when she doesn't want to, working to get stronger even if she is tired.
She sees me in 2-3 weeks and at that point, I hope to help her make decisions about the next steps based upon how she has recovered.
Because this is not cancer, but side effects of the chemo, I have faith she will recover, but please continue to motivate her as best you can, and reassure her that this is not typical or what we had in mind with respect to her treatment.
Andy

I haven't responded yet but I am going to ask about the immunotherapy and whether she was tested for dpd reaction to capecitabine. What else should I be asking or need to know?

BTW, regarding her MSI, her onc was going to discuss that and the genetic testing at her next appointment but we never got that far because she landed in the hospital instead. We will discuss at her next appointment at the end of this month.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

aja1121
Posts: 212
Joined: Sat Jun 28, 2014 5:12 pm

Re: Adverse reaction to capecitabine?

Postby aja1121 » Mon Jun 11, 2018 1:16 pm

Did your mom's oncologist prescribe Zofran and Lomotil with the capecitabine? Zofran is for nausea/vomiting and Lomotil is for diarrhea. Frankly I don't think she should have to ask for either of these when on chemo, they should have just given them to her.

Nurse practitioner at my husband's oncology office told him to take one Zofran followed immediately by a small meal or a large snack; then, 30 minutes after taking the Zofran, take the capecitabine. Following this little formula twice daily significantly decreased stomach pain/nausea. As for diarrhea, I think it's different for everyone, but my husband found Imodium just constipated him and then he'd have diarrhea again; Lomotil helped give him firmer stools.

Is she taking any capecitabine now, or are they holding it? Would the oncologist consider a dose reduction?
DH dx Stage 3B rectal ca 5/23/14 (age 41)
6/14 chemorad | 10/14 LAR, all nodes clean
12/14-04/15 FOLFOX x 10
05/15 VATS/lung met, 06/15 ileo reversal
09/15 local recurrence, 10/15 colostomy
11/15 FOLFIRI x 4, major growth, 02/16 tumor debulked
11/16 Xeloda/Avastin until progression 08/17
09/17 start NCT02024607 (BBI608 + FOLFIRI arm) until progression 02/18
03/26/18 start NCT02817633 (anti-PD-1 + anti-TIM-3) until progression 06/19/18
06/19/18 start NCT03175224 (c-Met inhibitor)

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Adverse reaction to capecitabine?

Postby emkaye » Mon Jun 11, 2018 3:43 pm

I'm so sorry your dear mom has to suffer like this. I'm praying that she improves in health and spirit little by little. It must be frustrating to not be with her at this time but your support whether near or far is improving her spirits I'm sure!
If she decides to continue her chemo, hopefully they can adjust to a more tolerable level and/or give her appropriate meds to mitigate her side effects.


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