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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 16 hours ago | Replies (1417)Comment receiving replies
Hello, I am the wife of Bob, my husband of 45 years. He was first diagnosed April 2022 with (very early) bile duct cancer, later scans showed (a very small mass on the pancreatic head.) . no found spreading and was on the road to a Whipple procedure after 4 rounds of chemo on his way to a potential cure.. At surgery they found more cancer that had spread into the belly (little seeds) , They now feel that this is pancreatic stage 4 cancer. They didn't do the whipple , but did repair a large hernia. The only treatment recommended for him going forward is more chemo and feel he has about one year to live. We are seeking more options and have found a study in Portland, Oregon using T cells and will be talking with them soon. we also read about an oral medication (Texas oncology) Lynparza PARP inhibitor that delays progression and improves survival rates. We are not getting much support from our local oncology department for new helpful treatments or clinical trials. I am reaching out to all of you if you have tried other helpful treatments to extend life. Thank you all so much for any information you can share with us. We Wish all for you the best.
Replies to "Hello, I am the wife of Bob, my husband of 45 years. He was first diagnosed..."
@lovingwifeterry, I add my welcome and would underline the caring response you got from @mayoconnectuser1. Have you considered getting a second opinion at MD Anderson or Mayo Clinic?
Terry:
This is Deb, wife of Tom, also 45 years. We have a very similar story. Tom was diagnosed in early March with what they said was a stage 2 tumor on the head of the pancreas. He endured 2 months of Folfirinox (which failed) and 4 months of Gem/Abraxine, which did lower the CA19-9 from 800 down to the 200s. We were so looking forward to the Whipple on Dec. 9 at Froedtert in Milwaukee. Devasted to receive a call from the OR that they found 3 tiny spots on the stomach lining, therefore, they abandoned the whipple. 5 hours of surgery to remove the gallbladder, reroute the bile duct etc. All they are suggesting now is more Gem/Abraxine. We are also looking for better alternatives! Going to speak with UW Carbone in Madison, WI and an inperson appt at Mayo in Rochester on the 17th of January.
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lovingwifeterry,
I think what you're feeling is local medical teams providing the normal standards of care approach, combined with significant statistical knowledge concerning the daunting and horrible effects of pancreatic cancer.
I believe these medical professionals are as traumatized as you are by this disease.
Once metastasis occurs outside the pancreas and perhaps formal restaging to Stage IV occurs, they know there is little to be done except, in many cases, return to chemo to buy a little bit more time.
What does his CA 19-9 trend indicate?