Level 1-4: low activity
Level 5-6: medium activityLevel 7-8: high activity
This NETest can pick up tumor activity unlike Chromogranin A and Pancreastatin which monitor secretion. The question that came up in the group was: What should one do with the information if the trend is upward? If that were the case, one could work with their doctor to consider modifying current therapy. Examples could include, increasing the dose of Sandostatin, finding the tumor(s) and removing it or some other systemic therapy such as chemotherapy or Peptide Receptor Radionuclide Therapy (PRRT). This test is individualized and therefore so is each patient’s management plan.
In order for patients and physicians to appreciate the benefit of trending values, the company has offered to give this blood test for free 3 times over a course of 9 months to each NET patient in the group. This way, each patient would have a baseline to measure their tumor activity. They have applied for a Current Procedural Terminology (CPT) code and anticipate having this in place by May, 2014. The procedure could then be covered by insurance before the 9 months of free testing is done. Wren Labs is bringing this test to the attention of patients prior or simultaneously to informing doctors of it. Nancy has been visiting support groups around the country to inform patients of the test, as well as having discussions with NETs specialists at various national conferences.
I think the challenge is to get doctors to understand and utilize the test. Just like anything, if the test shows high tumor activity and there is no good way of finding the tumors or correcting the problem, then what is the benefit of having this information? This could cause anxiety for patients, which seemed to be a concern to some of the patients in the group. A few of those in the group suggested that we all go together to Branford, CT, where Wren Labs is located to get the test done together. It would be like a Noids field trip!I’m inclined to go ahead and get the blood test. It is a very low risk procedure in that I don’t need to take any medications or get scanned and it could help others with this disease in the future. We’ll see what happens.
If anyone else would like to get the NETest, you can contact Nancy Teixeira at firstname.lastname@example.org