How do you manage symptoms of carcinoid syndrome? Tips please.

@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.

@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?

@tomrennie
Primary unknown. Suspected to be ilium.
In addition to what I wrote I also include antihistamines, motility meds, working with a nutritionist and Grounding techniques.. And sharing with other Netters our successes with our differing symptoms. I found it helpful here that others use antihistamines too.

@maeve115
I’m on Xermello

@nevinrbaskin
Thank You for mentioning Xermello. If my memory is correct, the number of people with NETs having Carcinoid syndrome is only about twenty percent. In addition to talking about and working through symptoms, and resolutions, of Carcinoid syndrome, it might be also helpful support each other for other things like the side effects/results of taking Xermello.
I do not take Xermello so would also be interested in knowing how you experience and manage this NET situation. I surmise strategies to help get through the Xemello days would also be helpful. Thanks again.

What treatment are you going through

@richard62castroville, welcome. I'm tagging other members in this discussion like @billbo @gtassithomas @maeve115 @fraaseo, who have experienced carcinoid syndrome symptoms.

Richard, what symptoms are you experiencing?

@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?

Hi Teresa
Yes, Lung Nets symptoms can differ from GI symptoms though it seems that fatigue always overlaps.
Sometimes it is difficult to distinguish between the structural symptoms of the tumor itself and the Carcinoid syndrome. They overlap. However, from the Carcinoid Syndrome itself there is the usual wheezing, coughing, shortness of breath, mucus, flushing and overproduction of liquid in the eyes that seems like counter intuitively to present as dry eyes (which is treated with the very expensive and worthwhile) prescription Miebo). I am so fortunate that I do not have Cushing Syndrome which is the release of ACTH from the tumor.
Twenty six months on Lanreotide and six months of Ochtreatide rescue shots.
Another way of handling the Lung and other area's Carcinoid Syndrome (mainly more flushing) is to self declare Cancer free days.. Where I give myself and others a deliberate break from dealing with Doctors, insurance, and discussions with friends and have a run-away-day even if it is to a local park with a companion, river, book, and campfire: Rejuvenates. And you? Any strategies in dealing with Carcinoid syndrome or NETs in general? Always interesting and helpful.

@colleenyoung
I was diagnosed with end stage 4 spread to my liver lymph nodes and lining of the abdomen . Main tumor in the small intestine.
Treatment is Lanreotide
Symptoms are fatigue , abdominal pain , muscle weakness. Flushing from the Carcinoid syndrome . Pain and discomfort from the infusion site .