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

Hello @perryleeoneal and welcome to Connect. I appreciate you sharing your journey with NETs. From your post, it looks like you were diagnosed about 5 years ago. A lot of people, like me, had no symptoms, but the NETs were found incidentally. Was this true for you?

I look forward to hearing from you again and knowing how you are feeling since your surgery and if you are having any problems with blood sugar.

I am having the once per month injection of Octreotide (sp?). The drug has calmed my hot flashes and diarrhea. It also has kept the mets to my liver in check and not growing. I think this is working for me. This drug gave me no side affects which is onderful.

Good luck with your NET treatment.

Michelle

Hello @splendrous,

I look forward to hearing from you after you see your medical team this month. I hope that you get some helpful information on how to proceed. Will you post an update?

I appreciate you sharing your experience with lantreotid shots, @dbmenger. You said that you have "...no discernible tumors anywhere." As I don't recall your NETs history, I'm wondering if the tumors were removed surgically.

I had two lantreotide shots. They controlled my hot flashes and made me feel human but only the next day. After that I felt horrible and it exacerbated my IBS. My Chromogranin A level doubled to 603 before the shots and halved after them. I have not had any discernible tumors anywhere so shall I continue with maybe octrotide in an attempt to feel human?

@splendrous, thanks for sharing your source of the second paragraph. I appreciate that you shared your experience, the knowledge that your oncologists shared with you as well as information to quote that other people could review. The link opens a AI-generated answer. Google's AI tool called Gemini, scrapes all content on the Internet to provide these summaries.

AI (Artifical Intelligence) tools do not replace human judgment or oversight. Any text, image or video generated by AI should be viewed as a starting point, not verified factual information. It may contain inaccuracies, biases and other problems. You'll see in small print at the end of the AI summary the following caveat "This is for informational purposes only. For medical advice or diagnosis, consult a professional. AI responses may include mistakes."

It's a good idea to fact check and review for accuracy, relevance, and unbiased balance. I recommend clicking the little link icon to also see the original sources. It looks like in this instance the AI answer pulled from evidence-based studies.

Back to your situation @splendrous. I'm sorry to hear that your tumors continue to grow while receiving Octreotide. I'll be interested in hear what your oncologist suggests as next steps. When do you find out more?

After being on Ocreotide for almost 2 years a few of my tumors were still growing, after my PRRT (Lutathera) treatments they were shrinking..

Thank you for the information. Sounds like a fair question for your doctors. Knowing that they are growing is always scary. But, you do have options. Are you open to other treatments? Are you leaning towards any?

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and slow tumor growth. My typical carcinoids are so slow growing to begin with it’s hard for me to say if octreotide is slowing growth more but that is the intent. The docs keep telling me the tumors are stable but since I have 50+ they don’t give me exact measurements on each scan report anymore which is what I would prefer. Where is AI when you need it?

After reading so many posts over the past couple years, it seems like lung NETs and GI NETs are two completely different animals so octreotide may work better for lungs that GI?

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.