This is an extremely exciting time to be in the field of neuroendocrine. While it’s never a good time to have cancer, NETs are experiencing a real renaissance of understanding and treatments. Consider, for twenty years, there was just one approved and relatively ineffective (streptozotocin) drug for NETs. Now in the past 5 years, we have Somatostatin analogues (Somatuline (Lanreotide) and Sandostatin (Octreotide), Afinitor (Everolimus), Sutent (Sunitinib), Temodar (Temozolomide), and Interferon. In the last few weeks, we’ve seen the approval of the NETSPOT test (68-Gallium-DOTATATE PET/CT) for detection of NETs.
I feel like a proud parent with this latest news. When I started the first clinical trial for 68Ga DOTATATE in the United States at Vanderbilt I was immediately blown away with the results. Other colleagues who worked tirelessly on the long process of getting this approved obviously felt the same. Having this new information on a patient completely changed the way I viewed neuroendocrine disease!
In the next year or so, we expect LUTATHERA (177-Lu-DOTATATE, or Peptide Receptor Radionuclide Therapy, PRRT) to be available widely in the United States. So there’s a lot of cool stuff still coming. Other treatments on the horizon include new medications like Telotristat Etiprate (carcinoid syndrome), immunotherapy, and Dr. Kjell Oberg’s oncolytic VIRUS trial in Sweden. Let me see if I can encourage Dr. Oberg to share more details on that. Watch for an update next week!
Now, there are organizations that specifically focus on funding research and they certainly can use the help. THE HEALING NET FOUNDATION is currently focused on getting education and awareness about the total picture—research, current treatments, diagnostic tools, etc out to the medical community at large NOW. (NET Primer for Healthcare Professionals and travel grants to NANETS) We are encouraging collaboration and dialogue NOW between physicians (NET Summit) so that YOU, the patient can get the right diagnosis and treatment NOW.
So, please please support Healing NET Foundation in that effort, as well as other NET organizations funding research and educating patients. We are making great progress as we work together to defeat this complicated disease.