Welcome to our CaringBridge site. We've created it to keep friends and family updated. As I have said many times, we are very fortunate that this cancer can likely be squelched. I set up this site because we have many many lovely interested family/friends, and with my lame brain I cannot remember who has been updated on what! Thank you all for your interest and support!
The story began in spring of 2015 when Dale had one episode of unexplained abdominal pain. He had an ultrasound of his gall bladder to rule out gall stones. The ultrasound showed a liver lesion. Repeat CT and MRI scans confirmed liver lesions that did not go away. Liver biopsy in February 2016 confirmed a diagnosis of NeuroEndocrine Tumors (old term--carcinoid). We were lucky that these happened to be spotted with the GB US, and we were further lucky that the liver biopsy showed a low grade NET. Since then we have been told that NET disease can often be heterogeneous in its pathology, so hopefully the biopsy of other lesions and nodes after surgery will confirm consistently low grade disease. At any rate, this is a rare disease, so much so in fact that the designated cancer ribbon for NET is zebra striped.
When diseases are rare, information and research are also rare. Again, we are thankful that National Institute of Health (NIH) has a current study using a radioactive(Gallium 68) tagged peptide that binds to receptors found on NETs. We went to NIH and the scan showed the liver lesions and the primary tumor in the terminal ileum (a good spot to have the primary) and some lymph nodes and ?NET in the spleen. NIH recommendation is that Dale have surgery (our Plan A) and they can use a Ga68 probe to help locate difficult to find NETs when they operate.
I hope that I have conveyed the spirit of thanksgiving we feel. We are fortunate that this is a very slow moving cancer, that we found it as soon as we did, and that good diagnostic and treatment options are available. There is exciting research being done at Memorial Sloan Kettering in New York with an antagonist called JR11 that can carry a radioactive peptide to NET specific receptors (a type of PRRT) . This is our Plan B. NIH tells me that they hope we won't need a Plan B!