Carcinoid Syndrome

Hi Vicki353 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies from forum members yet. Responding to you will 'bump' it back to the top of the discussion list again.

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Hi there,

my husband was diagnosed a year and a half ago, largely in part due to what we now know were CS symptoms. Despite now having a diagnosis of Neuroendocrine cancer and receiving treatment every 3 weeks (increased from 4 weeks a few months ago to try get in top Of the CS symptoms), he unfortunately still suffers quite badly with the symptoms, especially in the days leading up to his injection as the previous dose starts to wear off. He has found that reducing meat has helped massively with the gastro issues and other than that all we do is pack him off to bed the second he starts feeling particularly unwell. Which is tough with two your kids and busy lives but it’s where he’ll end up regardless so may as well sleep through the worst. I can tell straight away looking at him that it’s ‘hit’ him: the flushing of the face and almost seeming a bit out of it. We have ended up in ED a few times as it’s been so severe. Please keep flagging with your consultant, it’s definitely improved marginally since increasing the frequency of Sandostatin. But unfortunately no where near elongated. Sorry I can’t give more positive news here!