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Husband had Whipple surgery and chemo: He's uncomfortable
Pancreatic Cancer | Last Active: Oct 1, 2023 | Replies (117)Comment receiving replies
Thanks very much for the background information and sharing tumor size. Three weeks ago a 1.8 X 1.9 cm was detected at the head of my pancreas proximal to the extreme lower common bile duct resulting in abdominal pain, light jaundice, very dark urine, abnormal bowel movements, enlarged bile duct/gall bladder/pancreatic duct, grossly elevated enzymes and bilirubin, and a CA 19.9 of 316. The abdominal CT scan showed no other abnormalities. Following an ERCP procedure and insertion of a plastic stent the following day, most signs and symptoms went away over the course of a week. We now are anxiously awaiting a series of appointments at the Mayo Clinic - Rochester beginning in 9 days and very eager to get going. We were initially advised we'd been seen promptly, but it's now been a month long wait and we are concerned the tumor has grown and perhaps metastasized. We hope the tumor is benign and resectable, but are preparing for something worse. Any and all advice welcome. Thanks for sharing your story.
Replies to "Thanks very much for the background information and sharing tumor size. Three weeks ago a 1.8..."
@wjk, I'm wondering why they didn't biopsy the tumor when they inserted the stent. My story has some similarities but some differences.
On 1-2-23, I began itching all over. It worsened, plus I became fatigued and lost my appetite, so I finally went to an ER on 2-13-23. I was jaundiced (didn't know that bc my apt. is so dark), my urine was dark, and I'd lost 14 lb in 6 weeks (I'm 5 ft tall, and that's a rapid loss for me).
Docs determined that there was a mass in my pancreas (I didn't think to ask its size) and that it was blocking my bile duct (hence all the itching -- elevated bilirubin). A stent was inserted, and during the ERCP the tumor was biopsied. My CA 19-9 was 387. Medication (cholestyramine, then ursodiol) helped with the symptoms and might have helped bring down my bilirubin (though I think the stent mostly did that).
I've just completed my 6th round of chemo (Folfirinox); after my 5th, my CA19-9 had dropped from 387 to 163. It's not clear whether I'm a candidate for surgery (there are some ambiguous nodules on my lungs that could indicate metastasis). At present, the plan is for at least 2 more rounds of chemo; my onc. is discussing my case next Wed. with the hospital's GI conference, to determine the next step (could be radiation, or radiation + surgery, or surgery, or more chemo).
I don't know whether any of this is helpful; I wish you all the best.
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wjk,
My non-professional advice is to get chemo started as quickly as possible - and, if there is any way to stay in Rochester, to continue it there. I know this is a very hard and inconvenient, but it will allow them to assess you every day - and you will be able to push for as much chemo as possible - while having an advanced center available to deal with side effects.