Digestive issues and pancreatic cancer

Posted by kay2 @kay2, Nov 6, 2020

I was diagnosed with endocrine pancreatic carcinoma in late December, 2017. I began Gemcitibine/abraxane to, hopefully, shrink the tumor on the tail of my pancreas enough to have surgery to remove it. Didn’t work so I began 28 days of radiation in July, 2018. Didn’t shrink. I began 10 treatments of Fulforinox in October , 2018, which thankfully , shrunk the tumor. I had a distal pancreatectomy/splenectomy in May, 2019, at University of Utah cancer center. My CA-19-9 was within normal range until about 9 months post op. It has continued to at least double every three months when I have my scans and in Aug, 2020 it was 2400. My CT and PET scans have been clear so far. My problem/questions relate to my digestive issues. I have taken Creon off and on and am currently taking it . I don’t seem to have any changes with or without. I still have multiple lose stools a day and lots of intestinal discomfort late afternoon to early morning. I take it to try to keep my food absorption ok. I weigh 95-96 lbs and this is steady.
I’m wondering what other meds anyone takes to help with the gas and bloating. I take Imodium, gas-x, beano,and anything else I might find on the pharmacy counter. My oncologists don’t recommend anything but the nurses and nutritionists have been helpful. I stay away from fatty food but have to admit, I like a piece of good chocolate daily.
Oh, I am a 73 year old (74 in Nov) female. I am active and healthy except for the digestion issues. If it weren’t for my cancer markers on the rise, I wouldn’t have a worry.

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@jeanne5009

@kamnorris2
Does your Dr. have you on Omeprazole? My guy tried everything and the Omeprazole 40mg is working fine.

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She's been on protonix (pantoprazole) since the start of chemo almost 2 years ago. For some patients who've had their gall bladder removed there's no viable solution.

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Have any of your physicians seemed concerned about Protonix side effects, or long-term use? My Dad is on it after his Whipple, and MD Anderson said to stay on it and KU Cancer Center said to stop.

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@mydadhadnetpancreatictumorandwhipple

Have any of your physicians seemed concerned about Protonix side effects, or long-term use? My Dad is on it after his Whipple, and MD Anderson said to stay on it and KU Cancer Center said to stop.

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Hi @mydadhadnetpancreatictumorandwhipple, that is so frustrating to get conflicting advice from different specialists about continuing vs discontinuing Protonix after Whipple. @caryns mentions that she takes it daily in this related discussion:
- Help...need guidance on eating after whipple https://connect.mayoclinic.org/discussion/help-need-guidance-on-eating-after-whipple/

Did either specialist explain why or why not to continue Protonix?

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Hello everyone, my Mom had Stage 1A pancreatic cancer and had the Whipple in July 2020. Unfortunately, the cancer returned to the peritoneum in December 2021. She had a minor laparoscopic procedure the same month to remove the new growths. She was NED again until July of this year, which showed a tiny new nodule again in the peritoneum almost pressing on the liver and a local recurrence on the pancreatic bed. She is currently not on treatment, as we are waiting for an immunotherapy trial to open up later this year, which targets her tumor's unique fusion.

What is most concerning to us is that over the last ten days or so, she has begun to experience some on and off gas/bloating after eating her meals. The gas/bloating goes away after an hour or so, but it is causing her discomfort. She also has been extremely stressed for the past several weeks with planning my sister's upcoming wedding, and because this is her first "symptom" ever since her diagnosis, she is hyper-focused on her stomach and it is all she can think about. In the past, whenever she gets anxious, she gets gas. Moreover, she was traveling prior to the start of this symptom and was eating pretty unhealthy. Everything else is fine- no pain, appetite is good, and her energy level is normal. She works out 4-5 days a week. I've also noticed that when she gets busy, especially with friends, she forgets she has gas/bloating, which makes me think this may be more of a stress-related issue. She has reached out to her GP and oncologist to get peace of mind. Has anyone else experienced this?

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@asingh90

Hello everyone, my Mom had Stage 1A pancreatic cancer and had the Whipple in July 2020. Unfortunately, the cancer returned to the peritoneum in December 2021. She had a minor laparoscopic procedure the same month to remove the new growths. She was NED again until July of this year, which showed a tiny new nodule again in the peritoneum almost pressing on the liver and a local recurrence on the pancreatic bed. She is currently not on treatment, as we are waiting for an immunotherapy trial to open up later this year, which targets her tumor's unique fusion.

What is most concerning to us is that over the last ten days or so, she has begun to experience some on and off gas/bloating after eating her meals. The gas/bloating goes away after an hour or so, but it is causing her discomfort. She also has been extremely stressed for the past several weeks with planning my sister's upcoming wedding, and because this is her first "symptom" ever since her diagnosis, she is hyper-focused on her stomach and it is all she can think about. In the past, whenever she gets anxious, she gets gas. Moreover, she was traveling prior to the start of this symptom and was eating pretty unhealthy. Everything else is fine- no pain, appetite is good, and her energy level is normal. She works out 4-5 days a week. I've also noticed that when she gets busy, especially with friends, she forgets she has gas/bloating, which makes me think this may be more of a stress-related issue. She has reached out to her GP and oncologist to get peace of mind. Has anyone else experienced this?

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@asingh90, gastrointenstinal symptoms can certainly be caused by stress and your mom has more than her fair share. You also mention that she has been traveling, working and not making healthy food choices. All that coupled with the excitement and stress of the upcoming wedding and recent health issues. Well, enough said.

Is she someone who can recognize her stress levels and take steps to calm them? Or does she, like so many people, ignore the signs of stress?

Might an online course like this help? It's self-guided and free from Mayo Clinic
– Stress Management for Cancer https://mccmscontent.mayo.edu/LSC/CEC/stress-management-for-cancer/index.html#/

How are YOU doing?

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@asingh90

Hello everyone, my Mom had Stage 1A pancreatic cancer and had the Whipple in July 2020. Unfortunately, the cancer returned to the peritoneum in December 2021. She had a minor laparoscopic procedure the same month to remove the new growths. She was NED again until July of this year, which showed a tiny new nodule again in the peritoneum almost pressing on the liver and a local recurrence on the pancreatic bed. She is currently not on treatment, as we are waiting for an immunotherapy trial to open up later this year, which targets her tumor's unique fusion.

What is most concerning to us is that over the last ten days or so, she has begun to experience some on and off gas/bloating after eating her meals. The gas/bloating goes away after an hour or so, but it is causing her discomfort. She also has been extremely stressed for the past several weeks with planning my sister's upcoming wedding, and because this is her first "symptom" ever since her diagnosis, she is hyper-focused on her stomach and it is all she can think about. In the past, whenever she gets anxious, she gets gas. Moreover, she was traveling prior to the start of this symptom and was eating pretty unhealthy. Everything else is fine- no pain, appetite is good, and her energy level is normal. She works out 4-5 days a week. I've also noticed that when she gets busy, especially with friends, she forgets she has gas/bloating, which makes me think this may be more of a stress-related issue. She has reached out to her GP and oncologist to get peace of mind. Has anyone else experienced this?

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Hello everyone, my Mom got diagnosed with Stage IA pancreatic cancer in July 2020. She had the Whipple, but unfortunately, the cancer came up in her peritoneum in Dec 2021. She had a minor surgery to remove the recurrent nodules in the abdomen and has been NED until July of this year, which revealed another sub centimeter nodule in the peritoneum as well as a 1.3 cm local recurrence in the pancreatic bed.

Moreover, since the beginning of August, her stomach has become distended- specifically, the upper abdomen. She has gained weight, but recently her appetite began falling as well because she feels uncomfortable due to her stomach. Her stomach is not gigantic, but it's definitely a noticeable change compared to how she looked in July. Her general practitioner, as well as a family friend doctor, have examined her and told us ascites is very unlikely given the localized nature of the distension and the various physical tests on her. Otherwise, her energy level is the same and is carrying on with normal activities. We are scheduled for her regular CT scan on Sep 12, but we are thinking of taking her to the ER for a scan earlier, as we are all very concerned if this is cancer related and the fact that she is feeling uncomfortable. We have been told it could also be a pancreatic enzyme issue related to digestion or a combination of different things. Has anyone else experienced something like this?

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@asingh90

Hello everyone, my Mom got diagnosed with Stage IA pancreatic cancer in July 2020. She had the Whipple, but unfortunately, the cancer came up in her peritoneum in Dec 2021. She had a minor surgery to remove the recurrent nodules in the abdomen and has been NED until July of this year, which revealed another sub centimeter nodule in the peritoneum as well as a 1.3 cm local recurrence in the pancreatic bed.

Moreover, since the beginning of August, her stomach has become distended- specifically, the upper abdomen. She has gained weight, but recently her appetite began falling as well because she feels uncomfortable due to her stomach. Her stomach is not gigantic, but it's definitely a noticeable change compared to how she looked in July. Her general practitioner, as well as a family friend doctor, have examined her and told us ascites is very unlikely given the localized nature of the distension and the various physical tests on her. Otherwise, her energy level is the same and is carrying on with normal activities. We are scheduled for her regular CT scan on Sep 12, but we are thinking of taking her to the ER for a scan earlier, as we are all very concerned if this is cancer related and the fact that she is feeling uncomfortable. We have been told it could also be a pancreatic enzyme issue related to digestion or a combination of different things. Has anyone else experienced something like this?

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I'm sorry to hear that your mom's digestive issues continue. I'm glad that further investigations have been ordered.

I moved your pancreatic cancer and GI-related posts to this existing discussion:
- Digestive issues and pancreatic cancer https://connect.mayoclinic.org/discussion/digestive-issues-1

I did this so you can read the previous helpful posts and connect easily with fellow members like @beachdog @kay2 @charliegolfrep @buckslayer @chemobile @wrolsen @kamnorris2

You may also be interested in these related discussions:
– Pancreatic enzyme replacement https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/
– Help…need guidance on eating after whipple https://connect.mayoclinic.org/discussion/help-need-guidance-on-eating-after-whipple/

Might you request an earlier scan at the cancer center rather than going to ER? Did her doctor think that she needs to be seen urgently?

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@colleenyoung

I'm sorry to hear that your mom's digestive issues continue. I'm glad that further investigations have been ordered.

I moved your pancreatic cancer and GI-related posts to this existing discussion:
- Digestive issues and pancreatic cancer https://connect.mayoclinic.org/discussion/digestive-issues-1

I did this so you can read the previous helpful posts and connect easily with fellow members like @beachdog @kay2 @charliegolfrep @buckslayer @chemobile @wrolsen @kamnorris2

You may also be interested in these related discussions:
– Pancreatic enzyme replacement https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/
– Help…need guidance on eating after whipple https://connect.mayoclinic.org/discussion/help-need-guidance-on-eating-after-whipple/

Might you request an earlier scan at the cancer center rather than going to ER? Did her doctor think that she needs to be seen urgently?

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Hello Colleen, thank you so much for your response. We did try calling the cancer center to see if they had an earlier scan opening, but they said nothing was available before the 12th. Her oncologist did not say she needs an urgent scan right now, but it's just our own anxiety that is causing us to think about going to the ER earlier. In fact, she has been feeling a bit better lately on her own. We're not sure if it is the right move or if it will be helpful, but our family friend doctors are telling us that the sooner you know, the sooner you can begin treating the issue- whatever the cause may be. They feel it is a gas-related issue, but the root cause is unknown. I have some reservations about the ER scan, though. I'm not sure if the pancreatic cancer radiologists will read it and/or the ER doctors have the same amount of knowledge on pancreatic cancer as the specialist oncologists. I feel their goal will just be to make sure there is nothing life threatening going on immediately and then send her home. However, my family is leaning towards going to the ER because my Mom does feel uncomfortable and though she gets hungry, she doesn't feel like eating that much because of the gas and stomach distension. Her energy level and everything else is normal. We are so confused.

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@asingh90

Hello Colleen, thank you so much for your response. We did try calling the cancer center to see if they had an earlier scan opening, but they said nothing was available before the 12th. Her oncologist did not say she needs an urgent scan right now, but it's just our own anxiety that is causing us to think about going to the ER earlier. In fact, she has been feeling a bit better lately on her own. We're not sure if it is the right move or if it will be helpful, but our family friend doctors are telling us that the sooner you know, the sooner you can begin treating the issue- whatever the cause may be. They feel it is a gas-related issue, but the root cause is unknown. I have some reservations about the ER scan, though. I'm not sure if the pancreatic cancer radiologists will read it and/or the ER doctors have the same amount of knowledge on pancreatic cancer as the specialist oncologists. I feel their goal will just be to make sure there is nothing life threatening going on immediately and then send her home. However, my family is leaning towards going to the ER because my Mom does feel uncomfortable and though she gets hungry, she doesn't feel like eating that much because of the gas and stomach distension. Her energy level and everything else is normal. We are so confused.

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Ascites can become "loculated" in pockets making it difficult to drain. Make sure she doesn't stop eating or having bowel movements. Ascites can apply pressure internally making either difficult or impossible. It's after the 12th now. What did the scan reveal.?

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