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Is everyone with pNETs on creon?
Neuroendocrine Tumors (NETs) | Last Active: Apr 26 11:19am | Replies (20)Comment receiving replies
I’m not sure why things are offered in a different order
Some things I read say Lanreotide is the first line of treatment and now PRRT can be
He has felt really good. Pain level is way down. He was having a lot of pain. I think the tumors might have been pressing on a nerve. The PRRT is suppose to shrink them. So I’m hoping that’s the case. He was very exhausted for about a week after treatment
Treatment is every other month for 8 months. Total of 4 treatments
The one on his pancreas was only 2cm. Biggest but multiple on his liver I think was 5 cm. I’ve heard of people having a lot larger with no pain. Just shows everyone is so different
Are you seeing a specialist?
We are not at this time. I still will ask about the oral chemo Still hopeful this PRRT will stabilize and shrink the tumors for a better quality of life for him.
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Our Dr. was mentored by a NET specialist but doesn’t research it so isn’t technically a NET specialist. He is treating a high percentage of patients with NET. He encouraged us to seek out a second opinion with a specialist and we are in the process of doing that. Good luck to you both.