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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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That's incredible, Carrie. I like your strength! What medical treatment are you taking for the peritoneal carcinoma?
My CT Scan didn’t show the issues I had. The only thing it showed the doctor was a fistula and the was determined it wasn’t a pancreatic fistula. When they finally did surgery 15 months later, the doctor found multiple issues from my Whipple surgery. Pancreas revision, small intestines twisted and fused, etc. This would never have been repaired if I hadn’t been very persistent for those 15 months.
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2 ReactionsGood for you. It can feel uncomfortable having a conversation where you have to challenge a dr.'s opinion, but it has to be done as we are our best advocates. Congratulations and keep up the good work!
None at the moment; I have an appt in 2 days to possibly start Gem/Abrax again. I only had 2 infusions a month ago and my white blood cells went down too far. I also experienced a lot of fatigue. I am considering not continuing the infusions as I have little pain and value feeling good every day. At 85, that's major. Also, I have not had a C-19 (?) since my last one at approximately 900; I'll be requesting that before my decision.
Marie, I read all your postings and admire your perseverance and optimism so much. Were I a younger woman, I would hope to be like you. Carrie
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1 ReactionNot exactly sure what the pain is and I don't have a much time post-whipple as your husband, but this is EXACTLY what I'm experiencing. I get the same responses from my doctors as well. Everything looks fine in the scans and bloodwork, but the pain is incredibly intense (so much so that I almost vomit from it at times) and very very real. Following. Hopefully one of our doctors can solve the mystery and we can then share that info with the other. Prayers