I had a very good visit with Dr. Reidy at Sloan. We spoke in depth about the merits and pitfall of the proposed treatment courses. In a nut shell, there is no free lunch here. You can't get benefits from any of the inhibitors / chemo without some kind of side effect. We have chosen to go with the TEM+XEL Chemo route. The good news is that it's oral medication. That bad news is that it's in a sense, traditional nasty chemotherapy. The more aggressive tumors should respond very well to this treatment. That said, we have decided to wait for another MRI in April to review disease progression. At first glance, this seems counter intuitive. Dr. Reidy noted, we don't really have a full understanding of the progression of the disease. That is, we've only seen these 2 new nodes crop up in the last six months. Therefore, it might be possible that it's not moving as fast as we think it is. While these tumors appear to be aggressive, as pathology and scans seem to indicate, we do not really know the rate that they are growing at. If in April, we see the nodes greatly increase in size or quantity, we will move to chemo ASAP. If not, we wait and scan again. Basically, I feel good now, so Dr. Reidy thinks it's best not to pump me full of drugs if we can hold off a bit. It's inevitable that I will need this treatment... The question now is... when? The focus until that time should be on building up my immune system and living a healthy lifestyle. I had a very good visit with Dr. Reidy at Sloan. We spoke in depth about the merits and pitfall of the proposed treatment courses. In a nut shell, there is no free lunch here. You can't get benefits from any of the inhibitors / chemo without some kind of side effect. We have chosen to go with the TEM+XEL Chemo route. The good news is that it's oral medication. That bad news is that it's in a sense, traditional nasty chemotherapy. The more aggressive tumors should respond very well to this treatment. That said, we have decided to wait for another MRI in April to review disease progression. At first glance, this seems counter intuitive. Dr. Reidy noted, we don't really have a full understanding of the progression of the disease. That is, we've only seen these 2 new nodes crop up in the last six months. Therefore, it might be possible that it's not moving as fast as we think it is. While these tumors appear to be aggressive, as pathology and scans seem to indicate, we do not really know the rate that they are growing at. If in April, we see the nodes greatly increase in size or quantity, we will move to chemo ASAP. If not, we wait and scan again. Basically, I feel good now, so Dr. Reidy thinks it's best not to pump me full of drugs if we can hold off a bit. It's inevitable that I will need this treatment... The question now is... when? The focus until that time should be on building up my immune system and living a healthy lifestyle. 
Found your blog during a PRRT search. My husband has NETS, in his stomach, pancreas, spleen and inevitably liver, primary unknown. He has just had his third of four rounds of PRRT with Lu77. We are in the UK where this treatment is standard. He has a relatively slow growth rate, and is well in himself. So far we have managed to avoid chemo, but who knows? I wish you well, and am glad to hear you are feeling pretty good too. I'll watch your progress with interest.
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