Recurrence after Whipple, Folfirinox and radiation (SBRT)

Posted by jengregs @jengregs, Dec 18, 2024

Hi all, my mom, 73, had Whipple in Feb 2023. Whipple was successful, totally resected but there WAS lymph node involvement. Did adjuvant Folfirinox for six month and 5 weeks daily radiation, has been on surveillance scans since.

Most recent scan shows two new masses in pancreas. Did a PET, showing moderate metabolic activity. Endoscopy was unable to get at the tumor for biopsy due to reworked anatomy. Ca-19 went from 88 to 150 over a few weeks. So this seems to be recurrence according to oncologist. Getting second opinion from original Whipple surgeon (could it be inflammation, etc). , oncology wants to start new chemo regime soon, Gemcitibine/Amaxabane.
Seems that we have to wait three-four weeks for blood test to see if immunotherapy is an option? Why so long?
Any faster/better options?
I don’t understand rumor tissue testing…would they send the “old” tissue? If they can’t get the new tumor tissue?
Could we get a second Whipple?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

marienewland | @mnewland99 | 3 days ago

In reply to @carrie40 "They didn't tell me what trial...I probably don't know enough to ask. I would think a..." + (show)

Get yourself tested first claudin 18.2 protein from any previous biopsy tissue. You must have at least 75% occurrence of it. FDA priced drug last December for it. ITS FOR PERITONEAL CANCER. Zoletuximab.

marienewland | @mnewland99 | 3 days ago

So many typos!approved drug

carrie40 | @carrie40 | 3 days ago

In reply to @mnewland99 "Get yourself tested first claudin 18.2 protein from any previous biopsy tissue. You must have at..." + (show)

Thank you, Marie...hearing from you as a long time survivor is so encouraging. A drug just for peritoneal cancer would be wonderful--I'll look into it. I don't know if I have been tested for that protein; I have got to learn to ask more questions if I hope to survive! Carrie

marienewland | @mnewland99 | 3 days ago

In reply to @carrie40 "Thank you, Marie...hearing from you as a long time survivor is so encouraging. A drug just..." + (show)

Yes, fighting this thing like nobody’s business!
You are a fighter and hope you co time posting for answers!

marienewland | @mnewland99 | 3 days ago

In reply to @carrie40 "Thank you, Marie...hearing from you as a long time survivor is so encouraging. A drug just..." + (show)

Also if you have liver cancer, histotripsy is FDA approved for that and they are now investigating its use for peritoneal cancer.

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