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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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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All, my husband had the Whipple in April 2020 and immediately gained back 20 of the 70 pounds he lost through the diagnosis and treatment program. He has struggled since the surgery to control very loose stools and in the past two months, developed a partial blockage in his colon, which was relieved with a stent placement (the new problem then is trying to control fecal incontinence but that's another matter). My inquiry today is looking for any and all advice on how to put weight back on! He has a good appetite and eats everything but it just doesn't stick, he has no fat on his body at all and it's depressing. Has taken Creon since the Whipple with a brief detour to ZenPep with no improvement so back on Creon. Docs and nutritionists have him on Immodium and Benefiber for the diahrrea but told us that sugar contributes to this problem, so we have to back off on that for a weight gain solution. Butters, cheeses, gravies, mayo, etc. – none of it seems to help him put weight back on. We do daily Ensures with high calorie content but not gaining ground. Has anyone with a Whipple ane resulting digestive/weight gain issues found something that works for you? Thanks in advance!

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@buckslayer

All, my husband had the Whipple in April 2020 and immediately gained back 20 of the 70 pounds he lost through the diagnosis and treatment program. He has struggled since the surgery to control very loose stools and in the past two months, developed a partial blockage in his colon, which was relieved with a stent placement (the new problem then is trying to control fecal incontinence but that's another matter). My inquiry today is looking for any and all advice on how to put weight back on! He has a good appetite and eats everything but it just doesn't stick, he has no fat on his body at all and it's depressing. Has taken Creon since the Whipple with a brief detour to ZenPep with no improvement so back on Creon. Docs and nutritionists have him on Immodium and Benefiber for the diahrrea but told us that sugar contributes to this problem, so we have to back off on that for a weight gain solution. Butters, cheeses, gravies, mayo, etc. – none of it seems to help him put weight back on. We do daily Ensures with high calorie content but not gaining ground. Has anyone with a Whipple ane resulting digestive/weight gain issues found something that works for you? Thanks in advance!

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@buckslayer sorry to hear about your husband. My wife had an Appleby as well as other organs removed including the gallbladder. You don't mention whether your husband had his gallbladder removed. The loose stools/chronic diarrhea and weight loss have all been issues for my wife since her surgery 1 year ago. Unfortunately, I can't say that we have a remedy. We worked with a nutritionist to get coaching on food selection but that wasn't as helpful as we hoped since she already has good dietary habits, but try it if you haven't already. We have also seen a gastroenterologist to rule out whether blockages in the rerouted ducts were an issue. The most likely issue for my wife was that bile was uncontrollably dumped. She now takes cholestyramine to help limit the bile but it's only marginally effective. It can take a long time to gain weight while all this is going on so look for small victories. Has his weight stabilized yet? Good luck and God bless you both.

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@buckslayer

All, my husband had the Whipple in April 2020 and immediately gained back 20 of the 70 pounds he lost through the diagnosis and treatment program. He has struggled since the surgery to control very loose stools and in the past two months, developed a partial blockage in his colon, which was relieved with a stent placement (the new problem then is trying to control fecal incontinence but that's another matter). My inquiry today is looking for any and all advice on how to put weight back on! He has a good appetite and eats everything but it just doesn't stick, he has no fat on his body at all and it's depressing. Has taken Creon since the Whipple with a brief detour to ZenPep with no improvement so back on Creon. Docs and nutritionists have him on Immodium and Benefiber for the diahrrea but told us that sugar contributes to this problem, so we have to back off on that for a weight gain solution. Butters, cheeses, gravies, mayo, etc. – none of it seems to help him put weight back on. We do daily Ensures with high calorie content but not gaining ground. Has anyone with a Whipple ane resulting digestive/weight gain issues found something that works for you? Thanks in advance!

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I should have mentioned also, that the dietary supplement shakes don't always work. Everyone wanted my wife to use them and we even found one that was mostly "clean" (Enu). Most of the shakes are filled with chemicals AND sugar, lots of it. While she was supplementing with shakes only once per day, the diarrhea escalated. She stopped the shakes and things improved slightly. The docs unfortunately mean well but the dietary aftercare isn't something they seem to know much about.

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Thank you so much for the quick reply beachdog! John's Whipple included removal of the pancreas head, lymph nodes, gall bladder, duodenum and a bit of the first part of the small intestine. He healed well from that and we were told diarrhea and weight gain would be long term issues, also that it can take a year for the body to adjust to its new plumbing. Between discussions with each expert (surgical team, oncology team, gastro team, kidney team, dietary team, colorectal team, etc.), it does seem like we need to figure things out for John's individual situation by trying things on our own to see what works/doesn't work. Right now he takes Immodium 30 minutes before each meal and we just added Benefiber to try and firm things up for better control. It seems to be working as long as he remains diligent about it. Since his small intestine is pretty much in tact, I don't understand why he isn't gaining weight – isn't this where most nutrient absorption occurs? The Creon is meant to manage this but maybe a study of how things pass through his system would be helpful – is this even a thing? I'm grateful for this forum as I know there are so many out there with various circumstances – any tidbit we can pick up at this point, or additional questions to pose to John's PCP – are helpful!

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I believe all of us who have had a front end Whipple have the same problem with trying to maintain, much less gain, weight. After nearly three years post Whipple, my wife started having me snack daily on peanut butter and jelly snacks she buys at Costco. It might not work for everyone, but it has helped me maintain my weight for several months. For a while, the ensure and high protein drinks helped, but my body now reacts unfavorably to those. If anyone has had luck with any other particular food, I would appreciate hearing of it as it is a daily challenge for me and probably every front end Whipple survivor. I will say however that I am very glad to be alive today and I would have the surgery again today if necessary. Local oncologists wrote me off three years ago, but fortunately I researched and found Dr. Stauffer at Jax Mayo.

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