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

Did they say why the switch from shot to pill? Thank you

Not sure where else to go for second opinion. I am already going to UW health carbone cancer center.

Ok. I am just curious because I have been taking oral chemo for almost three years. I took captem which is both capecitabine and temozolomide for about a year to shrink the cancer. I have been on a reduced amount of capecitabine since to keep things stable.

There is a new oral version of octreotide that is used to control carcinoid syndrome. Perhaps that is what @docoltun is referring to?

I've been told by Oncologist they are working on oral versions of Octreotide and Lanreotide. But who knows when those might become a reality.

As far as opinions go, every time I talk to an expert I get a different one. This is especially true when it comes to surgery. In my personal experience, I've learned to not be in a hurry to "FIX" a problem. Sometimes the cure is worse than the cancer!

Thank you! Like minded...

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.

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

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.

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.