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.

jlsgt | @jlsgt | Jun 24 9:35am

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!

lindabees | @lindabees | Jun 24 8:39am

In reply to @tomrennie "What daily pill will he be taking?" + (show)

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

Turkey, Volunteer Mentor | @tomrennie | Jun 23 3:25pm

In reply to @docoltun "Everolimus possibly. No word until after scan." + (show)

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.

amygirl | @amygirl | Jun 23 3:04pm

In reply to @docoltun "Nothing that large....chromagranin is the blood marker. I'm NOT an oncologist. Could be because he had..." + (show)

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

amygirl | @amygirl | Jun 23 3:01pm

In reply to @docoltun "Size of lesions run from 3cm to 13 mm, still under an inch. Doc is recommending..." + (show)

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

amygirl | @amygirl | Jun 23 3:00pm

Hmm wondering if different docters/clinics have different opinions. Was he having bad side effects if there under an inch? Are they slow or fast growing? Thank you

docoltun | @docoltun | Jun 23 2:23pm

In reply to @amygirl "Chromagranin? Daily pill? Thank you" + (show)

Size of lesions run from 3cm to 13 mm, still under an inch. Doc is recommending switch to Everolimus (pill form daily) from monthly injections.

docoltun | @docoltun | Jun 23 2:19pm

In reply to @tomrennie "What daily pill will he be taking?" + (show)

Everolimus possibly. No word until after scan.

docoltun | @docoltun | Jun 23 2:12pm

In reply to @amygirl "What size is small? I was told no shots til at least 1 inch. What are..." + (show)

Nothing that large....chromagranin is the blood marker. I'm NOT an oncologist. Could be because he had a large tumor removed (12 inches of intestine along with mass) some years ago. Get another medical opinion if you're concerned. These are large, nasty injections yet they kept growth down. Going for another nuclear body scan this month to see what's up.