I continue to have followup every six months at Mayo Clinic. They do a 24-hour HIAA urine test, blood work and CT scan. I continue to get a Sandostatin injection every 28 days to 1 month at the 30 mg. dose. I do well and feel good - only have occasional flushing and, for the most part, diarrhea. My doctor told me about a new medication waiting FDA approval this fall. It has shown some promise in reducing tumor size/growth. Hopefully I can use this.

Has anyone done any research with immunotherapy or talked to their doctor about it to know if it is something that NET patients can consider?

Hi @gaylejean. Thanks for sharing more of your treatment. I'm in the process of the 24 hour 5 HIAA test as well and a repeat of the Serotonin Serum blood test. While I see a doctor at Univ. of Michigan, I noticed that my lab tests are sent to Mayo. I had a high Chromogranin A blood test so that is the reason for the 24 hour 5 HIAA and the repeat Serotonin Serum. I'm not familiar with the new medication that your doctor mentioned, however, there is a National NET Cancer Patient Conference in New Orleans Sept. 22 through 24, so perhaps some more info will come from that conference. While I'm not attending, I hope that some folks who do attend can fill the rest of us in on what is new in the area of treatments. May I ask the name of your doctor at Mayo? Keep us posted on your progress. Best wishes. Teresa

I have had four different oncologists and am presently seeing Dr. Henry<br>Pitot. My previous doctor had been researching NET for his specialty but he<br>retired shortly after I started seeing him :(. He believed in MRI over CT<br>scan because it shows more detail. I have never had an octreoscan - have<br>you? The new medication is something of an offspring from the 60 mg. dose<br>of Sandostatin. Do you get the Sandostatin injection? Gayle<br><br>

When were you diagnosed and how old are you? Gayle<br><br>