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How do you manage symptoms of carcinoid syndrome? Tips please.
Neuroendocrine Tumors (NETs) | Last Active: Jul 26 7:42pm | Replies (23)Comment receiving replies
@colleenyoung
I experience a combination of symptoms from the lung and the ilium,appendix and small bowel I have been told that the serotonin (and more) release is by-passing the liver.
With this combination I have shortness of breath, mucus, fatigue, fog, flushing, fluctuations in bowels.
I am in progress practicing strategies to better live with symptoms and always interested in learning others.
Practically, We have added Ochtreatide self administered shots to the monthly lanreotide and have succumbed to using a rollator so I can sit when needed, and therefore can walk further.
Personally, I seem to need a lot more self compassion as I am not up to par. I require more boundary setting and energy saving. Nature walks and the garden revitalizes me as does simple grounding exercises. Naps compensate for waking up at night with flushing or bathroom breaks. And it helps knowing that other NET folks are experiencing similar things and sharing/learning with each other.
Replies to "@colleenyoung I experience a combination of symptoms from the lung and the ilium,appendix and small bowel..."
@maeve115 I appreciate you sharing more about the carcinoid syndrome symptoms and the way you deal with those symptoms. You mention lung symptoms of shortness of breath and mucus. Is this a result of Lung NETs? How long have you been taking the monthly Octreotide shots?
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@maeve115 Those symptoms can be a challenge. What helps manage them can be a bit of try it and see if it works unfortunately. What works for one person might not work for another. What have you tried so far? Where is your primary NET? Has it spread anywhere?