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

Posted by amygirl @amygirl, Dec 23, 2024

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

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

Sherry | @bluebelle | Jan 1 9:10am

In reply to @tgsenn70 "My husband was diagnosed with a NET a year ago. His doctor has only prescribed sandostatin..." + (show)

Hi! I’m so sorry to hear about your husband’s diagnosis. I believe in asking as many questions as possible and finding out as much as you can about this horrible disease. I think in order to receive Lutathera there are some criteria that the tumors/treatments must meet and what stage the cancer is at. I am stage 4 and the cancer has metastasized to my liver so the Octreotide wasn’t working alone. I would definitely ask his oncologist about this newer treatment option. Until then, best wishes and prayers to you both for a healthy, healing new year ahead!

tgsenn70 | @tgsenn70 | Dec 31, 2024

In reply to @bluebelle "Hi! I have been receiving Octreotide injections once a month for about a year now. For..." + (show)

My husband was diagnosed with a NET a year ago. His doctor has only prescribed sandostatin (hope I am spelling that correctly). Never even really mentioned radiation. I know it does depend on the individual’s specific circumstances, but I am just wondering if maybe we should inquire about it since that seems to be pretty common in others who have the same diagnosis. Can you share any additional information that might help us?

plbyates | @plbyates | Dec 30, 2024

In reply to @amygirl "Would any over the counter anti diarrhea help? On a daily bases?" + (show)

He tried everything. Xermelo is the only medicine that worked.

docoltun | @docoltun | Dec 29, 2024

husband has been getting lenreotide every 28 days for 2 years. doesn't like the injection tho chromogranin numbers normal, tumor growth or metasticize non-existant. Life goes on with no other related side effects

pavlina60 | @pavlina60 | Dec 27, 2024

In reply to @vinnie694 "I had the same experience with blood sugar rising.." + (show)

Me, too!

amygirl | @amygirl | Dec 26, 2024

In reply to @plbyates "My husband gets the sandostatin shot every 28 days and is also taking xermelo three times..." + (show)

Would any over the counter anti diarrhea help? On a daily bases?

plbyates | @plbyates | Dec 26, 2024

In reply to @catalinaharley752 "I’ve been getting two injections of 40 milligrams every 28 days for the last 3 years...." + (show)

My husband gets the sandostatin shot every 28 days and is also taking xermelo three times a day for the diarrhea. Xermelo has definitely helped for the diarrhea.

vinnie694 | @vinnie694 | Dec 26, 2024

In reply to @tmneuro "I have been receiving the Octreotide injections (Sandostatin, and now lanreotide) for 11 years, every 28..." + (show)

I had the same experience with blood sugar rising..

tmneuro | @tmneuro | Dec 25, 2024

I have been receiving the Octreotide injections (Sandostatin, and now lanreotide) for 11 years, every 28 days. The only side effects that I have noticed is that after my first shot 11 years ago, my blood sugar went up and I am now diabetic and deal with that on a daily basis. Other than that, I do not know of any other side effects. My liver and mesentary tumors have remained stable through these 11 years.