Unsure , questions on what to do

Posted by afsl25 @afsl25, 3 days ago

I’m posting a little update we just got today after seeing a neuroendocrine oncologist . As mentioned before my husband had surgery to remove A well-differentiated, Grade 2 pancreatic neuroendocrine tumor (NET) with the following characteristics:
• Ki-67 of 4% (moderate growth rate)
• 3 out of 12 lymph nodes were positive
• Perineural and vascular invasion
• Tumor was fully removed surgically
• His CgA level is in the normal range (57.4)

This specialist is recommending for him to be part of a study for this type of NET tumors which basically it’s a chemo pill he will need to take for a period of 4 months , CapTem , we are afraid of spread to actual organs or recurrence but the doctor says it’s only about 5% chance . We’re not against treatment, we just want to make sure this is the best option for him, not just a cautious one and wonder if there’s anyone here that went or it’s going thru the same treatment and can give us just us any advice

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Hello
My wife has had a good, sustained response to captem for her grade 2 stage 4 PNET. The standard dose, I believe is 14 days of capecitabine with 5 days of temozolamide in the last days of the cycle along with an antiemetic. The number of monthly courses seems to vary. You may find this article helpful:
https://pubmed.ncbi.nlm.nih.gov/36260828/

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