NET-VIPoma pancreatic tumors

Posted by edotagle57 @edotagle57, Oct 18, 2022

Good day,
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!

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

Welcome, @edotagle57. As you've learned, VIPomas are rare functioning neuroendocrine tumors that secrete vasoactive intestinal polypeptide (VIP). I'm sorry to hear that the tumors have returned and that you're now faced with some challenging treatment options and hard decisions to make.

I'm tagging fellow members @joannem @gaylejean @carcinoid23462 @char1962 @laurell410 @avawein who have taken octreotide (Sandostatin) long term and may have some experiences and thoughts to share with you.

I agree that your questions are very good ones to ask your medical team. It also helps to get real patient experiences too.

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I was diagnosed with Metastatic P-NET VIPoma in 2019. I had surgery to remove a part of my pancreas & liver, as well as gall bladder & spleen. Numerous lesions still remain in the liver. I had the option of Octreotide or Lanreotide, and opted for Lanreotide after researching.
Injection every 4 weeks indefinitely. I have seen good results so far...3 years and no new tumors ór growth of existing tumors. No significant side effects.

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@lbaron54915

I was diagnosed with Metastatic P-NET VIPoma in 2019. I had surgery to remove a part of my pancreas & liver, as well as gall bladder & spleen. Numerous lesions still remain in the liver. I had the option of Octreotide or Lanreotide, and opted for Lanreotide after researching.
Injection every 4 weeks indefinitely. I have seen good results so far...3 years and no new tumors ór growth of existing tumors. No significant side effects.

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Hello @lbaron54915 and welcome to Mayo Connect. I am glad to hear that you have had such good results with Lanreotide injections.

If you care to share more, what symptoms have been relieved by the Lanreotide injections?

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