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

I’ve been getting two injections of 40 milligrams every 28 days for the last 3 years. Dr says probably the rest of my life… not fun but it does help control the tremors and flushing. The diarrhea not so much.

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.

I had the same experience with blood sugar rising..

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

Hi! I have been receiving Octreotide injections once a month for about a year now. For me, the first few months caused some fatigue but it’s hard to say if it is from the shots or the cancer itself. I am stage 4 and my cancer has metastasized to my liver. I recently finished 4 rounds of Lutathera radiation in conjunction with the shots. I haven’t really noticed any ill effects of the shots personally and I will be receiving them every month for the rest of my life. I hope this helps:) Prayers and well wishes for you…

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?

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!

Hi! I have been receiving Octreotide injections once a month for about a year now. For me, the first few months caused some fatigue but it’s hard to say if it is from the shots or the cancer itself. I am stage 4 and my cancer has metastasized to my liver. I recently finished 4 rounds of Lutathera radiation in conjunction with the shots. I haven’t really noticed any ill effects of the shots personally and I will be receiving them every month for the rest of my life. I hope this helps:) Prayers and well wishes for you…