Sorry about the large font type, I tried to fix it and made it worse.

I was diagnosed in 2009, but have had it for about 20 years prior. One of the most important things I’ve learned in living with NETs, carcinoid, is to monitor and control my sugars. I’m on Somauline 90 mg./4 weeks. I hope this helps:

  Sometimes I'll read questions, comments, replies etc on those of us previously diagnosed with NETs who were or have since not lit up scans. Or even had abnormal labs. Yet we continue to have Carcinoid syndrome, all or some, daily. With no proof and we are now even considered NED (no evidence of disease). I am not an expert by any means. But whether it is because of "non-receptor tumors" or the "tumors are too small" to be seen, we still need and can be helped.  I hope this helps someone.

     Please read the entire article, towards the end Dr. Woltering explains how even though tumors do not have receptors, blood vessels feeding tumors do. When you slow down or cut off blood supply to tumors- "dead is dead".

       "This is work done in our lab by Dr. Seza Gulec, an LSU surgical resident.  Basically, this work shows that almost all of the tumors (about 85% of them) begin to sprout new blood vessels.  If your tumor cells have somatostatin receptors, the tumor dies and the blood vessels die.  If the tumor cell doesn’t have somatostatin receptors, the tumor doesn’t die but the blood vessels do.  Why is that important?  Because, dead is dead.  If the tumor cells are dead, the tumor is dead.  If the tumor can’t eat, drink or breathe, you’ve strangled it, and the tumor is dead, or in the worst  case scenario, at least will not grow.  Again, let me make this point: regardless of the tumor’s somatostatin receptor expression, if you kill the blood vessels feeding the tumor, the tumor will die or, at the very least, cease to grow." (http://www.carcinoid.org/for-patients/videos/introduction-to-the-basic-science-of-carcinoid/)

   These are a few more excerpts from that article explaining how non-receptor tumors can still benefit from treatment:

   "  There are three goals of therapy for patients with carcinoid tumors; 1) to control your symptoms, 2) to induce tumor regression or stop the tumors from growing, and 3) to increase your survival.  However, survival without a good quality of life really does not “cut it” in this group of patients. What we are after with carcinoid therapy  is increased survival with a good quality of life!

Some people got a great symptomatic response and some people didn’t have any response to the same dose of drug. So, Dr. Kvols and Dr. Jean-Claude Reubi started looking at the relationship between how many somatostatin receptors (sst 2) were on a patient’s tumor versus the patient’s clinical response. The more receptors, the greater chance that octreotide can inhibit peptide or amine release. If a tumor didn’t have receptors on its cells, a few people still got relief from diarrhea because octreotide and somatostatin act at two sites. They act at the “tumor site” for control of peptide-amine production, but they also act at distant sites like in the small bowel, the stomach, etc., to decrease fluid production and decrease bowel motility. This is called a “secondary site of action”.  Octreotide thus has the “double whammy” effect.

Thus, octreotide has an anti-tumor effect in addition to controlling diarrhea and flushing.

A normal blood vessel does not have somatostatin type two (sst 2) receptors.  Octreotide treatment doesn’t work from Day 1 to Day 6 because there is nothing for it to “plug in” to until around Day 6. About that time, the model starts to develop angiogenic blood vessels and the angiogenic vessels have somatostatin subtype 2 receptors .

  I am now on  Somatulane 90 mg./28 days. Without it  my quality of life would be nil.

Introduction to the Basic Science of Carcinoid - Carcinoid Cancer Foundation

www.carcinoid.org

Presented by Eugene A.Woltering MD FACS The James D. Rives Professor of Surgery and Neurosciences Chief, Section of Surgical Endocrinology, Director Of Surgical Research The Louisiana State University Heath Sciences Center New Orleans La 70112 From the Carcinoid  Wellness Conference Memorial Hospita…