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Any one with Neuroendocrine tumors getting the shot once a month?
Neuroendocrine Tumors (NETs) | Last Active: 2 hours ago | Replies (76)Comment receiving replies
Hi, I'm new to the group but was reading about the NETs but I've never heard of the shots and was wondering if someone can tell me the name. I had stage 4 neuroendocrine small cell lung cancer which had spread to lymp nodes, plural cavity, liver, with spots in my kidneys, pancreas, and spine. I was given 16 weeks to live 4 years ago. I took chemo, immunotherapy and radiation treatments plus on my own I tried the Joe Tippens protocol, you can Google it. I've done pretty good to still be here but now getting all the symptoms back so would love to know about this shot.
Replies to "Hi, I'm new to the group but was reading about the NETs but I've never heard..."
Hello @ds231 and @sammydj and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. It is a great place to learn from the experiences of others who are walking down this path. As NETs are not like typical cancers, the treatments are also different. As you are both new to this forum, I would like to invite you to attend a virtual NETs support group meeting next Thursday, May 1. Here is a link with information and the Zoom link,
https://connect.mayoclinic.org/comment/1289799/
@ds231
Would you share a little about how your diagnosis of neuroendocrine small cell lung cancer was found. Were you having breathing symptoms or a chronic cough?
@sammydj
How is your dad feeling now that the shots are less effective? Has he had any other treatments for his NETs other than the monthly shots?
Hi
Can I ask, don’t doctors know you taking anything like the Joe T protocol by blood tests and things?! Also I don’t know whether to take plunge and try it as not started chemo yet! I’m scared. Did you take anything extra or follow particular diet etc?
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Is the Joe Tippens protocol for neuroendocrine cancer? It looked like it was for pancreatic cancer.. My tumors metastasized to my liver.. When I received the results from the biopsy it showed neuroendocrine cancer, My doctor was relieved, basically said I have , Neuroendocrine cancer that spread to my liver (cancer in the liver) I don’t have liver cancer.. the prognosis for liver cancer was not good.. I was referred to Mayo to a Neuroendocrine specialist, and he totally explained the differences… Are you seeing a Neuroendocrine specialist?