1. < Esophageal Cancer

Stomach Pain and Folfox/Keytruda?

Posted by nuggetofmine @nuggetofmine, Sep 24, 2023

My husband has 2 more Folfox/ Keytruda treatments to go. His most recent CT scan on Sept. 12, showed no growth, no decrease in the tumor. No mets. He is stage 3, HER2 +. Not a surgery candidate, and 65 years old. He was diagnosed in Dec. 2022 as stage 4, and had chemo and radiation Feb. 2023, which shrunk the tumor. He went from not being able to eat because of pain and obstruction, to mostly being able eat if he takes Ativan and Zolfran right before eating. He also takes Prilosec. He has Oxycodone 5 mg for pain, which hasn't been helping the last few days.
Has anyone had stomach pain as a side effect from Keytruda? If his tumor hasn't grown, why would he have an increase in stomach pain after this round of Folfox? He's felt good until this last infusion. He was supposed to get fluids before treatment, but they forgot. The side effects were amplified this time. Could his stomach pain be caused from not getting the fluids before treatment?
The Oncologist said he is pleased with the results, so I'm hanging on to that, but I'm not even sure what to ask the Oncologist. Does he need stronger pain killers?

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suesresearch | @suesresearch | Dec 18, 2023
In reply to @colleenyoung "Welcome, Sue. I hope @nuggetofmine sees your question. I'm sorry to hear that your husband is..." + (show)
@colleenyoung

Welcome, Sue. I hope @nuggetofmine sees your question.
I'm sorry to hear that your husband is experiencing such terrible stomach issues as treatment continues. How many more treatments does he have to go? Has the symptom management nurse suggested anything for the pain?

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We’ve tried many things and nothing has worked. Thanks for checking. Because her post had a lot of similarities i thought I’d check in.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 18, 2023
In reply to @suesresearch "@nuggetofmine us your husband still stomach pain free? My husband was fine on Folfox/opdiva for the..." + (show)
@suesresearch

@nuggetofmine us your husband still stomach pain free? My husband was fine on Folfox/opdiva for the first ten treatments but the last three he has had terrible stomach ache and it seems extremely similar to what you described. No relief even days after chemo

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Welcome, Sue. I hope @nuggetofmine sees your question.
I'm sorry to hear that your husband is experiencing such terrible stomach issues as treatment continues. How many more treatments does he have to go? Has the symptom management nurse suggested anything for the pain?

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1 reply
suesresearch | @suesresearch | Dec 16, 2023

@nuggetofmine us your husband still stomach pain free? My husband was fine on Folfox/opdiva for the first ten treatments but the last three he has had terrible stomach ache and it seems extremely similar to what you described. No relief even days after chemo

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1 reply
kdietrich | @kdietrich | Oct 24, 2023

Ask for pain management help

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23, 2023
In reply to @nuggetofmine "UPDATE 2: He gained 12 pounds in the last two weeks according to his weigh in..." + (show)
@nuggetofmine

UPDATE 2: He gained 12 pounds in the last two weeks according to his weigh in at the cancer center. He's gradually adding foods to see if he can tolerate them. Still no spices, including pepper. If we had looked in to this sooner, he wouldn't have lost 70 pounds. I think our mistake was attributing any stomach pain to the cancer. He has actually had no pain from the cancer since his tumor decreased back in March. Hopefully this information can help someone.

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@nuggetofmine, this is such great news. I appreciate the updates and information. I think it’s quite natural to suspect that every symptom as being cause by the cancer or the treatments. I’m glad that you and your husband’s team got to the root cause of the stomach pain and that a solution was found.

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nuggetofmine | @nuggetofmine | Oct 14, 2023

UPDATE 2: He gained 12 pounds in the last two weeks according to his weigh in at the cancer center. He's gradually adding foods to see if he can tolerate them. Still no spices, including pepper. If we had looked in to this sooner, he wouldn't have lost 70 pounds. I think our mistake was attributing any stomach pain to the cancer. He has actually had no pain from the cancer since his tumor decreased back in March. Hopefully this information can help someone.

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1 reply
nuggetofmine | @nuggetofmine | Oct 4, 2023

UPDATE: We saw the Oncologist, explained the symptoms and the improvement after cutting out caffeine and eating very limited, bland foods. He offered a prescription level PPI, but we declined, since the Prilosec, alternated with Zantac seems to be working (along with the diet changes). Also, adding Tums before and after eating or any time there's too much stomach acid. The Oncologist set him up for fluids two days this week, which included steroids in yesterday's batch. He also said to skip treatment this time and we'll meet again in two weeks. My husband has been feeling so much better! Knowing he has two weeks off has been so good for him mentally, and just being able to eat again is wonderful. He lost 5 pounds from this Gastritis thing, and had previously been maintaining his low weight. So this will give him time to hopefully start gaining again.

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socalkelly | @socalkelly | Oct 1, 2023
In reply to @nuggetofmine "He had no good days after this last chemo/ immuno treatment, not even the nice two..." + (show)
@nuggetofmine

He had no good days after this last chemo/ immuno treatment, not even the nice two or three days he usually has from the steroids. It's been two weeks.

To make a long story short, his symptoms- severe stomach pain that doubles him over, nausea, sometimes vomiting, headache, diarrhea- all within a few minutes of swallowing a bite of food (and water this last treatment), seem to indicate a Gastritis type of issue. The symptoms are all there every time and last from a couple of minutes to 20 minutes. He's so thin, he can't afford to lose any more weight! We looked into the diet modifications for Gastritis and have been following them for the last two days. The two things that have made the biggest difference for him are eliminating caffeine and while continuing the twice daily Prilosec, also using Tums before eating and after eating. And using Tums during the day when his stomach hurts for any reason. The Prilosec helps heal the stomach lining, helping to reduce acid production, and the Tums help dilute the stomach acid that's already there, or that gets dumped during eating. Bland , low acid food has really helped, although we tried that before without the Tums, and without the caffeine elimination and it didn't help at all.

Last night, day 2, he stayed up late, just eating and eating. Pain free. He is eating better than he has in a couple of months. We have cancelled his Monday treatment and will be consulting with the oncologist. We've been trying to get to the bottom of this pain for months. From what I've read, there isn't really a treatment, other than strict diet and the acid reducers, and time. I guess that's why the doctor never offered anything to treat it with. The Oxycodone he has did not even touch this pain.

Hopefully this can help someone experiencing the same symptoms.

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So sorry your husband on going through this. My husband did keytruda after his esophagectomy. He didn’t have issue with his stomach but rather fibrous masses in his lungs (pulmonologist suspects side effect from keytruda). Still treatment and cancer took another run at him. He’s now doing chemo with oxiplatin (sp) and FOLFOX. It’s doing its job with the cancer but chemo side effects are in full force!
He has a jtube and it’s saving his life. It’s 90% of his nutrition. He sometimes has pain but it is managed with Tylenol/ibuprofen.
You mentioned Prilosec, is he on the prescription strength protonix? Maybe he needs a stronger dose. My husband takes it every night. Helps with the acid for sure!

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jmp1514 | @jmp1514 | Oct 1, 2023
In reply to @nuggetofmine "He had no good days after this last chemo/ immuno treatment, not even the nice two..." + (show)
@nuggetofmine

He had no good days after this last chemo/ immuno treatment, not even the nice two or three days he usually has from the steroids. It's been two weeks.

To make a long story short, his symptoms- severe stomach pain that doubles him over, nausea, sometimes vomiting, headache, diarrhea- all within a few minutes of swallowing a bite of food (and water this last treatment), seem to indicate a Gastritis type of issue. The symptoms are all there every time and last from a couple of minutes to 20 minutes. He's so thin, he can't afford to lose any more weight! We looked into the diet modifications for Gastritis and have been following them for the last two days. The two things that have made the biggest difference for him are eliminating caffeine and while continuing the twice daily Prilosec, also using Tums before eating and after eating. And using Tums during the day when his stomach hurts for any reason. The Prilosec helps heal the stomach lining, helping to reduce acid production, and the Tums help dilute the stomach acid that's already there, or that gets dumped during eating. Bland , low acid food has really helped, although we tried that before without the Tums, and without the caffeine elimination and it didn't help at all.

Last night, day 2, he stayed up late, just eating and eating. Pain free. He is eating better than he has in a couple of months. We have cancelled his Monday treatment and will be consulting with the oncologist. We've been trying to get to the bottom of this pain for months. From what I've read, there isn't really a treatment, other than strict diet and the acid reducers, and time. I guess that's why the doctor never offered anything to treat it with. The Oxycodone he has did not even touch this pain.

Hopefully this can help someone experiencing the same symptoms.

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gastritis can be an adverse reaction to the immunotherapy. Please pursue this with your oncologist

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dave640 | @dave640 | Sep 30, 2023

Maybe time for an endoscopy?
Sending well wishes to your husband during this tough time.
Dave

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