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ongoing pain 1+ years post-whipple
My spouse was dx with pancreatic cancer almost 2 years ago. 2cm, no lymph node involvement. He had 7 rounds of FULFIRONOX prior to his Whipple last April, and 5 more rounds after that. He finished his chemo in Sept/Oct of last year.
He continues to have daily pain (more or less, depending on the day or part of day), which seems to be as the feces moves through his intestines. All his scans have been clear. He takes CREON with his food and has tried different doses in consultation with his nutritionist and it hasn't really changed the pain. The oncologist and surgical team have all said there's nothing wrong from their perspective. But this is definitely impacting his quality life.
For those of you who have been this far out from your Whipple or farther, is this similar to your experience? How long post-Whipple/post-chemo did the pain continue?
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I’m so sorry that your husband is going through this! I chose not to have any treatments …. don’t think I will change my mind.
I’m praying that he gets some relief! This pain is 3 - 4 times worse than a woman’s monthly friend!
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3 ReactionsExactly what type of pain is he having… and where is the pain? I ask because those of us who have had the Whipple certainly experienced some pain but it may not have been in the same places.
The pain is in the abdomen. He says it feels like it is caused by the feces moving through the intestines, so the pain moves as the feces move. And it can get worse for a while and then as stuff moves to another place it can get better.
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2 ReactionsI’m not sure what that pain is. My pain always came and still happens sometimes when I either eat too much at a sitting or consume too much sugary food. My pain is a cramping at the top of my stomach. At times it can take me down for 15-30 mins. It always goes away as my stomach eventually digests the food. My Whipple was in June 2023 and my last chemo treatment was Nov 2023. The pain I experienced was even worse while I was going through my treatments. It would occur almost every morning after breakfast. It only occurs now when I eat more than I should or I eat too much sugary foods. I hope this helps.
I am 2+ years out post Whipple and I still get pain across upper abdomen, under my ribs.
Luckily it only lasts a few minutes but is very intense.
I can’t link it to anything, but in past it was after spicy food, so thinking it’s gas build up?
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1 ReactionHi! I wanted to let you know that I went through excruciating pain after my Whipple. I developed a fistula that wouldn’t heal and my doctor said he wouldn’t perform surgery again. I have to believe that your husband’s doctors have performed CT Scans to see if he has any internal issues causing his pain. Every doctor visit I would tell them about my pains and they pretty much ignored it. My surgery was in May 2023. I went 15 months with drainage from my back and chronic pain. Finally the doctor decided to do surgery because I never gave up on trying to get them to help me. I had surgery on August 22, 2024 and when I woke up I felt better than I had in those last 15 months. Of course I had to heal from the surgery but he did to do a lot of revisions when he did my last surgery (things he didn’t see with a CT Scan). It is a miracle to be free of the pain. I take 4 ZenPep at every meal (cheaper than what your husband is on). I do have some bad days with my bowels but no more of the abdominal pains that would take my breath away. If you feel something isn’t right don’t give up the fight. I didn’t and it changed my life. 🙏
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6 ReactionsOver 2 years after the Whipple for me: what you are experiencing sounds like the gas movements I have. I would never have believed gas hurt so much! And my pancreatic cancer has now moved into peritoneal carcinomatosis--what works for me is a little walk (indoor or outdoor) after eating, camomile and peppermint tea (plain), and yes, Gas X. If diarrhea accompanies, Immodium now has an extra ingredient for soothing. And a heating pad occasionally. Pain-wise, I feel good; tired and weak, not so good. I hope some things you have control over might help you a bit...Carrie (85 years and hoping for another)
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1 ReactionI'm only almost 7 months post whipple and I experience alot of this as well. Have an endoscopy and colonoscopy scheduled in a little over a week and an oncologist appointment not long after. Did your husband do any adjuvant treatment? Or just the whipple?
11 months after surgery I am still loosing weight and my pain level has increased. My scans and blood work looks good, but they can’t explain the weight lost and pain? I am starting to get weaker and doing less. I have gone from 205 to 124 lbs in one year and I wasn’t over weight. Good Luck
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1 ReactionMy Whipple was in April 2022. Had some drains and a place that would not heal until July. 12 FULFIRONOX and then later 6 months of CISPLATIN. A lot of pain in 2023 which ultimately turned out to be a blockage in my bile duct. My gastroenterologist cleared that up with an ERCP and put my on pantoprazole every day ever since. Like @montyd , eat in moderation, take 1 creon before meals and almost never have any pain now. After a 50+lb weight loss I put back 15 and am stable now at 184. I hope you figure out your problem. Sometimes it takes a while.
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