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.

Hello @kay2 , my wife is in a similar situation. She had a distal pancreatectomy in February 2020 at Johns Hopkins after 9 folfironox treatments and 5 days of SBRT photon radiation. At the same time as the pancreatectomy, they took the spleen, Gaul bladder, one adrenal gland and over 20 lymph nodes. Thankfully all were clear of active cancer. You can imagine that they also did some major re-routing of ducts. She lost 25lbs in 3 weeks and has had chronic diarrhea and severe gas pain ever since.

She uses Creon regularly and is still experimenting with timing and dosage every few weeks with the guidance of a nutritionist. The creon seems to have no bearing on the diarrhea. A few months ago, based on our research and request, her oncologist prescribed cholestyramine. The purpose of the cholestyramine is to sequestrate bile which is passing unregulated into the intestines due to the missing Gaul bladder and duct changes. Timing is critical. She recently started taking it 2x per day, 30 minutes before eating and it has reduced the bouts of diarrhea. Not saying that this is a cure, it just seems to help so far. We're told to be patient after such radical surgery the organs can take a year to recover.

Her gastroenterologist is ordering a SIBO test to determine if her small intestine has a bacterial overgrowth from the large intestine, another possible side effect of the surgical trauma to her system and possible cause of diarrhea.

Good luck in your recovery.

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My wife was diagnosed in June 2015, head of the pancreas. After Gemcitibine/abraxan she was able to have Whipple surgery in December 2015. Has taken Creon before each meal and seems to work.Was all clean until July of 2018, CT scan showed a couple of small spots on the lungs. After 5 fu etc. radiation and gemzar as well as Xeloda her tumors show stable but Marker are slowly increasing. Had a biopsy and samples are being sent to be profiled, waiting for results. Have appointment with radiologist this week. She feels fine when not on chemo and not any digestive issues. marker are 550. Increasing each of the last 3 months. Very concerning

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@beachdog

Hello @kay2 , my wife is in a similar situation. She had a distal pancreatectomy in February 2020 at Johns Hopkins after 9 folfironox treatments and 5 days of SBRT photon radiation. At the same time as the pancreatectomy, they took the spleen, Gaul bladder, one adrenal gland and over 20 lymph nodes. Thankfully all were clear of active cancer. You can imagine that they also did some major re-routing of ducts. She lost 25lbs in 3 weeks and has had chronic diarrhea and severe gas pain ever since.

She uses Creon regularly and is still experimenting with timing and dosage every few weeks with the guidance of a nutritionist. The creon seems to have no bearing on the diarrhea. A few months ago, based on our research and request, her oncologist prescribed cholestyramine. The purpose of the cholestyramine is to sequestrate bile which is passing unregulated into the intestines due to the missing Gaul bladder and duct changes. Timing is critical. She recently started taking it 2x per day, 30 minutes before eating and it has reduced the bouts of diarrhea. Not saying that this is a cure, it just seems to help so far. We're told to be patient after such radical surgery the organs can take a year to recover.

Her gastroenterologist is ordering a SIBO test to determine if her small intestine has a bacterial overgrowth from the large intestine, another possible side effect of the surgical trauma to her system and possible cause of diarrhea.

Good luck in your recovery.

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Thank you for your informative reply. I do want to tell your wife that it did take at least a year after surgery before I was my self.
Good luck on your journey.

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@charliegolfrep

My wife was diagnosed in June 2015, head of the pancreas. After Gemcitibine/abraxan she was able to have Whipple surgery in December 2015. Has taken Creon before each meal and seems to work.Was all clean until July of 2018, CT scan showed a couple of small spots on the lungs. After 5 fu etc. radiation and gemzar as well as Xeloda her tumors show stable but Marker are slowly increasing. Had a biopsy and samples are being sent to be profiled, waiting for results. Have appointment with radiologist this week. She feels fine when not on chemo and not any digestive issues. marker are 550. Increasing each of the last 3 months. Very concerning

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Thank you for responding. I find it encouraging that your wife has survived 5 years. We get such grim diagnosis going into this.
Sorry she may have new tumors. I will pray for her to have strength and courage as she moves forward.

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@kay2

Thank you for responding. I find it encouraging that your wife has survived 5 years. We get such grim diagnosis going into this.
Sorry she may have new tumors. I will pray for her to have strength and courage as she moves forward.

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Thank you, we are hoping to receive effective data from the profiling. We also stay in close touch with the Pancan network
Avery good and supportive organization. A wealth of information on Pancreatic Cancer

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I agree

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Hi @kay2 @charliegolfrep and @beachdog, you may also be interested in this related discussion:
– Pancreatic enzyme replacement https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/

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