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?

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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.

pavlina60 | @pavlina60 | Dec 25, 2024

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

I get 120mg every 4 weeks. It does control all the symptoms! My hair started falling out, so I take Biotin and it seems to help.

catalinaharley752 | @catalinaharley752 | Dec 25, 2024

In reply to @kevinmonroemi "I had unpredictable diarrhea, as far as I know lesions are tumors." + (show)

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.