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NIH clinical study looking for the gene causing carcinoid cancer
Neuroendocrine Tumors (NETs) | Last Active: Aug 13, 2017 | Replies (6)Comment receiving replies
Hi Faith: I was at the NIH last year for their familial carcinoid study, as my mother had carcinoid also. The study lasts about four days. They do about four scans, with the Gallium 68 being the last one. They like to compare the scans to see how much more the GA68 shows - and it does, and it did in my case. It is by far the most sensitive scan out there today. Everything is free, including the lodging for my husband while i was there. The people are super nice and after you complete the protocol you and all members of your family can be evaluated by the NIH for free. I did it not only for their research, but also to assure my family's inclusion at the NIH in the future if necessary. Let me know if you need any contact information. Good luck to you and yours.
Joan
Replies to "Hi Faith: I was at the NIH last year for their familial carcinoid study, as my..."
Hi Faith: I went to the NIH in April, 2016. My mom never went there. She died at age 89 of a small bowel blockage which turned out to be carcinoid. She never knew that she had any kind of tumor. She had no flushing or pain, although she did suffer from palpitations, probably afib. As carcinoid was listed as a "cause of death" on her death certificate, the NIH decided to take me for their clinical trials. I have not returned to the NIH as I live in central Florida, so this year I had my GA68 done at the Moffitt Cancer Center in Tampa. I see Dr. David Metz at the University of Pa. in Philadelphia on a yearly basis, and have not been on any medications so far. Let me know if I can help you in any way. Best to you and yours.
Joan
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Hi Joan
So you are one of the 75-80 families they have in the study. I was surprised that is all they have since starting this back in 2008. I sent in my dad's liver biopsy and preliminary autopsy report saying the carcinoid started in his ilium. They will review this and let me know if they want to include my family in the study. If we are accepted they said we would probably go in next spring.
I just think it is good to help with whatever research is being done. Genetic testing will be the diagnostic method of the future. Plus the testing they also give you is good to get there also.
When did you and your mother go there? Have you returned for repeat tests?
Faith