Does sandostatin work?

Posted by grammabitz @grammabitz, Nov 22, 2022

First diagnosed in 2015 and had stomach pain, vomiting ,and two weeks of diarrhea.After catscan,a blockage wasfound at the junction of large and small intestine. Went immediately to surgery and had my appendix and two feet of bowel removed. Apparently originated in appendix. Went on sadostatin and in 2021 had surgery to remove a tumour the size of a baseball from my neck above the clavicle. Had been injected every 28 days prior to this and don’t understand why the drug did not work for my neck. This has made me very nervous since apparently there are lymph nodes in my belly that are cancerous.

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

Colleen Young, Connect Director | @colleenyoung | Nov 22, 2022

Welcome @grammabitz. You are understandably nervous. I'm tagging fellow members like @joannem @gaylejean @carcinoid23462 @char1962 @sophiarose @laurell410 @gulzar who have experience with Sandostatin injection (octreotide) treatment for NETs.

Grammabitz, I want to be sure that I'm understanding your timeline and diagnosis correctly. In 2015 you were diagnosed with the neuroendocrine tumor in your intestines for which you had surgery. At that time some of the lymph nodes removed showed cancer as well. For that reason you were given Sandostatin every 28 days to help reduce the spread of cancer.

Fast forward to 2021, when you had further surgery to remove a tumor from your neck just above the clavicle. Was this tumor diagnosed to also be a neuroendocrine tumor? Is it considered metastatsis (spread) from the original cancer?

sophiarose | @sophiarose | Nov 22, 2022

Hi
I am so sorry to hear of your situation
I had primary NET liver cancer removed in 12/2019
I was good up till 3/2021 when I was diagnosed with NET metastatic liver cancer of unknown origin
I did Lanreotide for 3 treatments which made me severely sick 24/7 as well as major injection side effects and when a mri was done after the 3rd dose my liver tumors were still growing and new ones showed
It didn’t work!!!
I started octreotide which stopped my diarrhea and flashing as well as gave me quality of life
Other than the fatigue I feel good
I don’t know if it has stopped the tumor progression yet
I am getting a mri in January if the tumors are still growing I will be getting a liver embolization in January
If that doesn’t work my original liver surgeon will be removing the right side of my liver
I wish you well!!

grammabitz | @grammabitz | Nov 23, 2022

In reply to @colleenyoung "Welcome @grammabitz. You are understandably nervous. I'm tagging fellow members like @joannem @gaylejean @carcinoid23462 @char1962 @sophiarose..." + (show)

After a biopsy, it was determined to be the same cancer as in the bowels.Don’t know if it matasitized but The attitude was that it did.

char1962 | @char1962 | Nov 23, 2022

Hi my thoughts and prayers goes out to you , we are dealing with this rare cancer and it can be very scary especially if your not getting the answers you need, being a part of this group helps you navigate through the challenges we face by referrals to specialists etc .

triveraderubio | @triveraderubio | Nov 24, 2022

My prayers go out to everyone on this thread. Dealing with the unknown can be challenging. Through this group I have been blessed to learn and share experiences. I have learned with my recent diagnosis, to embrace the unknown and move forward despite the fear. Will my journey be hard, yes, but with faith, not impossible. No matter how far I seem to be from where I wish to be, I will never stop believing that somehow, I will get there.

Be Blessed.