Please help! Severe stomach pain when eating

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kblairj
Posts: 4
Joined: Fri Mar 03, 2023 8:46 am

Please help! Severe stomach pain when eating

Postby kblairj » Sat Mar 11, 2023 11:11 am

My husband was diagnosed with Stage IV colon cancer/peri Mets after an emergency resection in January. He started Xelox/Capox regimen 3 weeks ago and the first two weeks he tolerated it well but then developed severe abdominal pains when the first bite of any food hits his stomach (not nausea but then gets nauseated from the pain) His onc seems to think it is gastritis but he can barely eat, and had to get IV fluids. They started him on Olanzapine last night and also Prilosec earlier this week but nothing is helping. They paused the chemo for a week to help his stomach heal. Has anyone else experienced this? I can’t stand to see him in such pain and unable to eat. Thank you.

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beach sunrise
Posts: 1092
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help! Severe stomach pain when eating

Postby beach sunrise » Sat Mar 11, 2023 2:07 pm

Have they done any tests at all for the complaint? C-diff, H plori, or a scan to check for blockage of some kind? Any thought in reducing the OXA to see if that's the cause.
Just throwing these out there but I have not had that issue. Others will chime in with thoughts I'm sure.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

kblairj
Posts: 4
Joined: Fri Mar 03, 2023 8:46 am

Re: Please help! Severe stomach pain when eating

Postby kblairj » Sat Mar 11, 2023 3:18 pm

They have only done bloodwork, no new CT Scans since his last one was only 3.5 weeks ago. Don’t think it’s the Oxa since he has only had one infusion, also 3 weeks ago and this is a new development in the past 7 days that has gotten progressively worse. The Olanzapine they just prescribed caused him to sleep 16 hours today so that’s also a concern. Thanks for your reply. Just trying to navigate this as a newbie caregiver to this club.

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beach sunrise
Posts: 1092
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help! Severe stomach pain when eating

Postby beach sunrise » Sun Mar 12, 2023 1:11 am

You have come to a great group of knowledgeable, sincere people here.
In the meantime search this site for info on your husbands case.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

kblairj
Posts: 4
Joined: Fri Mar 03, 2023 8:46 am

Re: Please help! Severe stomach pain when eating

Postby kblairj » Mon Mar 13, 2023 7:46 pm

Update: we ended up in the ER where he had a CT scan with contrast. This was one day AFTER we saw his oncologist who said it was simply gastritis. It was not. He has ileitis from the capecitabine. They paused his treatment for one week, have given him an anti-spasmodic,lomotil and a bland diet to see if we can get it under control. I’m a little bothered by the fact that this didn’t even cross his oncologist’s mind at all. I have also read that he may need a cortosteroid to help it heal. Playing it one day at a time but really hoping he can restart his chemo next week. I feel like I research and sm more knowledgeable than his doctors. Is this common?? Thanks for all the suggestions. Navigating this one day at a time.

roadrunner
Posts: 480
Joined: Sun Jan 12, 2020 8:46 pm

Re: Please help! Severe stomach pain when eating

Postby roadrunner » Tue Mar 14, 2023 2:34 pm

I don’t know if I would say that it’s common “to be more knowledgeable” than the doctors—in fact, I think that’s rare or at least uncommon—but is it essential to be an informed, aggressive advocate? Absolutely, and Bravo! to you for doing so here.

In that regard, don’t hesitate to raise the corticosteroid (in a firm but respectful way). If such stuff continues (or has been a pattern), I’d consider a new oncologist (if possible). These folks are very busy, and my advice is always: (1) build relationships if possible, including through positive, personal interactions with receptive physicians and staff and (2) read, research, ask as much as you can bear and understand, then filter that down to essentials and communicate timely, firmly, and respectfully.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Rock_Robster
Posts: 1038
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Please help! Severe stomach pain when eating

Postby Rock_Robster » Wed Mar 15, 2023 1:13 am

To be blunt, unless you’ve also done a 10+ year degree and residency plus specialisation training, it’s very unlikely you’re “more knowledgeable” than his doctors. Unfortunately it’s easy to fall victim to the Dunning-Kruger effect when it comes to medicine.

However, what you likely do have is a lot more time and resources available to track and investigate the minutiae and unique details of your husband’s case, including “mesearch” (ie secondary research tailored around one specific patient’s unique set of presentations and history), and to tap into a broad community of experienced patient advocates. His doctors in most systems simply have no time to do this, and are also usually bound by treatment protocols either of the hospital, the insurer, or the government (depending on the location).

This is a powerful combination however. Your oncologists‘ skills, training and access to resources - combined with your motivation, time, capacity and energy - if you can find a way to work collaboratively can be very powerful. Some doctors really enjoy working like this, others don’t - I’d suggest taking the time to find one of the former.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

kblairj
Posts: 4
Joined: Fri Mar 03, 2023 8:46 am

Re: Please help! Severe stomach pain when eating

Postby kblairj » Sun Mar 19, 2023 7:37 am

Appreciate the replies and definitely did not mean to insinuate that I am more knowledgeable than the doctors because I am not---but ours don't seem to be truly listening to us in terms of symptoms, etc. In fact, when the severe stomach pains first began, it took me 4 days for ANYONE at the office to return my calls and they never even answered on the portal that they recommended we use. I ended up calling at night to their triage nurse who recommended going to the ER---where a week later my H got a CT scan that diagnosed the pain and severe diarrhea as ileitis. He's on the mend now, with the chemo paused a week, but he ended up losing a lot of weight he couldn't afford to lose in the time between me TRYING to get some help and actually figuring out what was going on--plus the pause in treatment. We do have a second opinion appt coming up Friday. I can't see us in a long-term relationship with his current oncologist as I don't feel comfortable around him already and it's impossible to get in touch with anyone in his office in a timely manner---is this the norm?

Thanks again.

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Please help! Severe stomach pain when eating

Postby Jacques » Thu May 04, 2023 1:09 pm

roadrunner wrote:I don’t know if I would say that it’s common “to be more knowledgeable” than the doctors—in fact, I think that’s rare or at least uncommon—but is it essential to be an informed, aggressive advocate? Absolutely, and Bravo! to you for doing so here.

In that regard, don’t hesitate to raise the corticosteroid (in a firm but respectful way). If such stuff continues (or has been a pattern), I’d consider a new oncologist (if possible). These folks are very busy, and my advice is always: (1) build relationships if possible, including through positive, personal interactions with receptive physicians and staff and (2) read, research, ask as much as you can bear and understand, then filter that down to essentials and communicate timely, firmly, and respectfully.

Rock_Robster wrote:To be blunt, unless you’ve also done a 10+ year degree and residency plus specialisation training, it’s very unlikely you’re “more knowledgeable” than his doctors. Unfortunately it’s easy to fall victim to the Dunning-Kruger effect when it comes to medicine.

However, what you likely do have is a lot more time and resources available to track and investigate the minutiae and unique details of your husband’s case, including “mesearch” (ie secondary research tailored around one specific patient’s unique set of presentations and history), and to tap into a broad community of experienced patient advocates. His doctors in most systems simply have no time to do this, and are also usually bound by treatment protocols either of the hospital, the insurer, or the government (depending on the location).

This is a powerful combination however. Your oncologists‘ skills, training and access to resources - combined with your motivation, time, capacity and energy - if you can find a way to work collaboratively can be very powerful. Some doctors really enjoy working like this, others don’t - I’d suggest taking the time to find one of the former.


The topic of doctor/patient communication has appeared here several times recently.

A similar concern about the ways that doctors and patients exchange information has been touched on from time to time by an Australian oncologist in her various books, newspaper opinion pieces, other writings and public appearances in the media. I was wondering if anyone here has run across any of her ideas, and if so, what you think of them. She seems to be one of the few doctors willing to speak out candidly about how different doctors deal differently with their suffering patients, and how well these doctors manage to deal with the various conflicting demands and wishes of their patients.

Any impressions?



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