Anyone have pNET in pancreatic tail & had distal pancreactomy?

@christobelle89 How long ago was your surgery and what did they do for your liver.

@kathyfujii
I apologize for not remembering how long the surgery was. It was in Feb of 2017 at Hopkins and I was there for 4 or 5 days? after. They also removed the spleen but did not do anything to anything else as my cancer was very small and there were no mets as it had been discovered serendipitously. I did get three meningitis shots-two in one arm and one in the other as I didn't have a spleen. When I got home, they were what hurt as I had to sleep on my back. I had to go back to Hopkins to have the drains from the laparoscopic surgery removed and was astonished as a non-medical person at how much tubing was there. My mets to the liver were discovered with the annual CT in late November and then verified with an MRI and PET. I am on Lanrotide and having problems with high blood pressure although the mets appear to be responding to the Lanreotide. We are working on the high BP.

@tomrennie
Hi there!
Iv’e been diagnosed coming on five years now and had multiple lines of treatments. Had IV chemo from December to April since I developed Insulinoma (where tumors secrete insulin and cause blood sugars to plummet) and my cancer went from grade 2 to grade 3. The IV chemo barely shrunk my liver tumors. What worked for me now is I started Cap/Tem chemo pills in April and had two rounds of TARE( they go thru groin and place radiation to tumors in liver). This is shrinking my tumors and now my blood sugars are controlled. Side effects are fatigue and sores on my feet. This is small price to pay though as Insulinoma is horrible. My husband found me unconscious w blood sugars in the 30’s. Very scary. I wear a continuous glucose monitor that barely alarms now. Phew! I’m so happy that so far I’ve found something that is working. Will need another liver biopsy to see if I’m still grade 3, but I feel so much better. Plan now is another 8 months of Cap/Tem two weeks on two weeks off and hope to continue tumor shrinkage as the liver Mets have been difficult to slow down. I hope this helps and feel free to ask any questions. I apologize it took me so long to reply. I’m terrible at checking my emails. Hope you’re having a peaceful day.🤗

@marni999 Also have grade 3 insulinoma. Had only one biopsy 12/23 and didn’t know grade could change. Stage 4 (liver) before it was even detected.
Have you had PRRT? I was getting chemo every other week but the PRRT was every 7 weeks with much better tolerance.
Before this I had multiple incidents of losing consciousness from low glucose. Housemate called ambulance twice, strangers a couple times as well as a friend and colleague at least once. (I thought my time was running out and was going to put him in my will. Instead he died suddenly from aortic dissection (like Sen Graham). He described back pain he had but I didn’t know about this condition at the time or what that pain meant.)

@marni999 Scary stuff. I am glad things seem to be improving. Did your TARE procedure use Yttrium-90? I did Cap/Tem for 13 cycles. They shrunk and stabilized everything for me. I have been on just capecitabine since to keep things stable. No worries on the delay in responding. I apologize for the same. Now that we are feeling better, it is time to live the best that we can right? Do you happen to know your Ki-67 scores that took your grade from a 2 to a 3? To my knowledge, grade progression doesn't happen frequently. Thanks.