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High grade 2 and 3 neuroendocrine

Neuroendocrine Tumors (NETs) | Last Active: Apr 15, 2023 | Replies (27)

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@tomrennie

Well, let me know if there is anything that I can do to help. I just did some homework and your cancer is more aggressive than mine. i knew that I had some time. I had been sick for about 3 years before someone tested for cancer. I am stage 4 pancreas to liver. Finally got that confirmed with Mayo Phoenix on 8/22/22. I started CAPTEM about a week later. The side effects are pretty typical: aches, pains, nausea, vomiting, diarrhea, really itchy, and just feeling sick. I take CAP pills from day 1 - 10 and both the CAP and TEM pills on days 11 - 15, I have two weeks off, then start again. I am currently on my 7th cycle. The first two cycles were hard. i was sick most of the time. But, through some trial and error with my wife and care team, we have come up with a cocktail that is greatly limiting the side effects. For example, the chemo hasn't made me vomit in months. I have an appetite back and have gained some weight. The main tumor no long blocks my portal vein and smv. i feel so much better. I am told that my cancer is never going away and is inoperable. So, I wanted to find something that I could take for the long haul. The Dr. only presented CAPTEM. He was pretty confident it would work. I am so glad that he was right. Please let me know, if there is anything else that I can do to help Sean. OK?

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Just to add on CAP/TEM, it in conjunction with Lanreotide injections, helped my wife reduce her mass on pancreas and too numerous lesions on liver and and reduced them by around 80%, to allow surgery on both. Not cured, but greatly reduced down to grade 1, with many options left it it reoccurs. Hope it helps you also.