Connect
Digestive issues and pancreatic cancer
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Connect
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!
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.
-
Like -
Helpful -
Hug
2 ReactionsAs noted above, my wife couldn't take the supplement drinks, even ones I made myself from all organic ingredients. Didn't matter if the proteins were vegetable or dairy based.
We've been surprised at the seemingly "no-logical" pattern of which foods agree with her and which don't. Raw vegetables OUT. Roasted brussel sprouts or asparagus IN. Rice and beans IN. Pizza with vegetable toppings IN although tomatoes in any form OUT. High fat takeout Chinese food IN. Light ice cream or yogurt OUT. Premium full fat ice cream or yogurt IN.
Some some days even things that worked previously don't work.
It's a lot of experimentation. Good luck.
-
Like -
Helpful -
Hug
2 ReactionsMy whipple was preformed almost 9 1/2 years ago and lost over 100lbs within a few months following. My gastro doc put me on Creon, Sucralfate and Pantoprazole, was told as far as the Creon I would have to gradually increase the dosage until I found what would work for me, finally settled on 36000 units before each meal or snack and works fine, at this time have no diarrhea problems. Since my whipple have only manage to put back on 20lbs.
-
Like -
Helpful -
Hug
2 ReactionsI am reading all this and wondering if cancer was diagnosed. Surgeon told Gary if he waited another month for the Whipple it would have been a cancer situation. It was a rough 6 months to figure out what worked. He had to go back in as he developed a hernia. After that he got on Omeprazole and Creon. Now just Omeprazole and he is fine.
My Mayo docs give me Rifaxamin. It is intended for travelers diherria but they give it to me for my end stage cirrhosis...just a thought.
Dear kay2,
I, too have digestive issues related to pancreatic cancer. Gas has been a serious problem, along with fairly constant stomach pain. Recently, I was told by my doctor to try phazyme, sold over the counter. I think it works better than gas x. It might work better for you, too. I hope this helps you.
Kathy in AZ
@kamnorris2 Welcome to Mayo Clinic Connect.
It sounds like you have information and support to share.
May I ask if you are looking for anything in particular from Connect?
Hi Erika,
I have followed Connect for about 6 months or so, but never before contributed. I have pancreatic cancer, and I find it very informative to read the posts.
Currently, I finished radiation and chemo (March 12), and I’m waiting for Whipple surgery.
There will be a CT scan on April 7th, and I’m hoping to move to schedule the appointment I need with the surgeon. I will meet one more time with the oncologist and the radiation oncologist in the after the 7th, but the surgeon’s appointment hasn’t been scheduled. Not sure how much I can contribute but happy to try. 🤗
-
Like -
Helpful -
Hug
1 ReactionThe phazyme doesn't do anything for my wife. It's just a double dose of the same ingredient as gas-x. If it's working for you and you run out, just double up on the gas-x which is cheaper even when doubled.
@kamnorris2
Does your Dr. have you on Omeprazole? My guy tried everything and the Omeprazole 40mg is working fine.