Any one with Neuroendocrine tumors getting the shot once a month?

https://www.google.com/search?q=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&rlz=1C1UEAD_enUS1116US1116&oq=octreotide+not+containing+the+growth+of+neuroendocrine+cancer&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRiPAjIHCAIQIRiPAtIBCTIzODIzajBqN6gCALACAA&sourceid=chrome&ie=UTF-8
Above is the source. I have read that it is not 100% effective with everyone in controlling growth. Many people still have growth of their tumors. I am in that category. I am seeing my doctors this month and will be asking them if we need to change direction since the tumors are continuing to grow while I am receiving the shot. I had very minor growth in the three months before I started taking the shot.

Where did you get the 2nd paragraph from? Or are they your words? I am just trying to clarify and learn. Thanks.

I have been told by multiple oncologists that along with managing symptoms it also inhibits the growth. I have no functioning tumors, so no symptoms. Just given it to control growth. My understanding it does not shrink just contain growth for some patients.

Octreotide, a somatostatin analog, plays a significant role in the treatment of neuroendocrine tumors (NETs). It primarily works to inhibit the growth of NETs and control their associated symptoms.

I just pulled this from Mayo's website:

"Octreotide injection is used to treat severe diarrhea and other symptoms that occur with certain intestinal tumors (eg, vasoactive intestinal peptide tumors or VIPomas) or metastatic carcinoid tumors (tumors that has already spread in the body). It does not cure the tumor but it helps the patient feel more comfortable."

So, I think the Octreotide injections were to help with the symptoms. I don't believe that they stop the tumors from growing. What did you believe the Octreotide shots were for?

Hello @rit333 and welcome to the NETs support group on Mayo Connect. I appreciate you sharing your journey with NETs and I'm glad to hear that the treatments you have received have been helpful to you.

You do not mention how long ago you were diagnosed with NETs in the pancreas nor when it was discovered in the liver. As you are comfortable doing so, please share more about how long ago you were diagnosed. Also, have you had any other treatments besides the monthly injections and the PRRT (Lutathera)?

Were your tumors growing while you were on Octreotide and that is why you were given the Lutathera? How have the tumors responded since you had the Lutathera treatment? Thanks for sharing.

i appreciate your sharing. Were your tumors growing and that is why they gave you 4 rounds of Lutathera? How did the tumors respond to the Lutathera treatment? I am grade 2, metastatic to the liver. No known origin but assume it was the GI track. I have had 8 Octreotide shots and the tumors continue to grow.

My husband started Roth Octreotide & has now switched to Lanreotide, both shots makes him itch & break out in hives , maybe every 2 or 3 months it looks like he gets a severe case of acne(where he won’t leave the house) Thus is only from the neck up. We spoke with the oncologist who responded he had heard this happens but rare

The only side effect my husband expressed was painful injection and some swelling or a tiny subcutaneious 'knot' at the site for a day after.

Thank you! Like minded...