Dear Carcinoid.

From reading the posts it seems that you have done all the things I would do in search for advice, new information and recommendations. Through testing and evaluations a NET specialist would be able to determine if your husband would be a candidate for PRRT. I was diagnosed in 12/08 with NET tumors that had metastasized to my liver. That was 10 years ago and I know that the tumors were there before my diagnosis. After 9+ years of monthly octreotide injections, I had my first PRRT infusion on 11/28/18 and my second one will take place on 1/30, less than 2 weeks from today. That being said, I also have other health issues: heart disease, diabetes, arthritis, g6pd deficiency and a few others. Actually, I'm managing the "other" health issues more so than the NETs. The moderator of our state's Neuroendocrine Cancer Awareness Network has been living with NETs for over 21 years now and if you met, talked or fellowshipped with him you would have no idea that he has been on such a long NET journey. I'm starting year 11 and hope that I see another 11 years. There is hope for us with more awareness, research and treatments available for us dealing with this rare disease.

Do your due diligence in pursuing a good NET specialist. We all are different in some ways and other health concerns can impact the treatments available for us.

Wishing you the best and hope that you locate a NET specialist that is sensitive, willing and able to treat your husband in accordance with his other health issues.

Tresjur