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

Posted by gtassithomas @gtassithomas, May 2, 2019

I have had carcinoid syndrome symptoms for a few years. Had many blood tests and urine and scans, scopes first couple years. All neg. but I continue to have GI problems, I get flushed hot face, chest not as bad as face both feel hot like sun burn. My heart rate goes up though not severely and I can feel it pounding and sometimes skip beats. I had echocardiogram in 2016 normal. Nothing shows up but I know my symptoms are very abnormal and it is hard to eat.

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richard62castroville | @richard62castroville | Jul 26 7:35pm

Diagnosed in sept 24’ have Palative Care nurse for pain and discomfort

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 26 7:40pm
In reply to @maeve115 "Hi Teresa Yes, Lung Nets symptoms can differ from GI symptoms though it seems that fatigue..." + (show)
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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.

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@maeve115

I have not had carcinoid syndrome. I have had three GI surgeries but no other treatment. I do admire the way you are handling the symptoms. I especially like your "cancer-free days," where you don't talk or think about it, just relax and give yourself. That is a great plan!

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 26 7:42pm
In reply to @richard62castroville "Diagnosed in sept 24’ have Palative Care nurse for pain and discomfort" + (show)
Profile picture for richard62castroville @richard62castroville

Diagnosed in sept 24’ have Palative Care nurse for pain and discomfort

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@richard62castroville
I am glad to hear that you are receiving Palative Care. Are there specific meds you take for pain? Are there any other non-medical therapies that have helped you?

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