NET-VIPoma pancreatic tumors
After suffering for 5 years with no answers, I was diagnosed with non staged NET-VIP tumors in the pancreas in 11/2021.
On 1/22 I had a Whipple procedure done, which entailed removing the head of the pancreas to eliminate the NET-VIP tumor, gall bladder and reconnection of bile duct and removal of a tumor inside my stomach.
Now, after a grueling 11 month recovery, my symptoms are reduced by 75 percent, but now after a PET scan, the tumor on the tail of the pancreas has grown slightly and my hormone levels have not returned to normal levels.
The gastro had said to watch the smaller one on the tail after and endoscopy and biopsy, and may be removable by laparoscopic surgery.
Now I am enslaved to use Insulin the rest of my life, and the preferred treatment from my team is the use of SANDOSTATIN regimen 1 a month at a low dose because of my susceptibility to many side effects of meds.
I was also told that the SANDOSTATIN shot will be with me the rest of my life…
I don't think I can commit to that, so I may be opting for more surgery.
Im just starting to manage my gastro problems with diet, ect. and am afraid of the possible severe side effects from the treatment.
Although each individual is different, with the treatments you are dealing with, what can I expect from the SANDOSTATIN regimen?
If I do nothing, can I lead a semi normal life as now with minimal symptoms?
I will be conferring with my medical team soon and need to make a decision…
Searching for side effects to treatments is extensive and confusing, so am asking real people for their experiences.
Thank you for your attention and may GOD BLESS!