Possible Carcinoid Syndrome

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Possible Carcinoid Syndrome

by Rose95 on Tue Aug 02, 2016 01:12 AM

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Hello,

I am desperately trying to find help and advice for my husband. I am very worried that he could possibly have Carcinoid Syndrome. I am hoping you can help me. I would greatly appreciate it. The dermatologist who brought this to our attention does not have the knowledge to help us and his endocrinologist is not of much help either.
My husband (38 years old) went to the dermatologist about 2 months ago for facial flushing/redness/burning and some eye irritation (occasional burning, dryness, bloodshot).  She perscribed a topical cream and Oracea (doxycycline). She diagnosed him with rosacea but ordered a 24 hr urine test to rule out carcinoid syndrome even though he didn't have diarrhea at the time she wanted to be safe.  The test came back negative.  We read that you need to be having diarrhea for the test to show positive, but he did the test anyway.
So 2 months go by and his face is so much better, no more flushing, eye improved 50%. The only thing is he started experiencing abdominal cramping when he started the doxycycline 2 months ago, the doctor said take it with some toast, the cramping went away slowly after about a month, maybe a little longer.
Now about 2 weeks ago his face starts flushing again, pretty steady pinkness on his nose and cheeks and an occasional red sunburn like on entire face and burning all over like he has sunburn. And also around the same time he started to have diarrhea about every 3 or 4 days, only once or twice on same day, usually between 7-11 pm, then it will go away. It will go away for days at a time and then come back for one day.
My husband was also diagnosed 10 years ago with Acromegaly and he's been injecting Lanreotide (Somatuline Depot 120mg, once a month) since his diagnosis and this is also a treatment for Carcinoid Syndrome.
After speaking with the dermatologist, she said to stop the doxy, it could be causing the stomach issues, she is not sure why he is flushing again, said to watch what he eats, maybe something is triggering it and she perscribed a different topical cream. Also told him to try probiotics.  She mentioned discussing carcinoid with his endocrinolgist. Well.... when I did talk to him about it (2 months ago when we learned about carcinoid) he said he's "familiar" with carcinoid syndrome and if the urine test comes back negative then he believes that my husband does not have carcinoid syndrome.
So we're concerned now since the flushing seems worse and the diarrhea he's having.  I have read so much about the Lanreotide helping people with the symptoms of diarrhea (I don't see so much about people flushing) and also with this mecation shrinking or stopping the growth of their tumors.
So if he's been on this medication for 10 years is it possible he could still have carcinoid syndrome? Does Rosacea treatment work for carcinoid related flushing? He's willing to take the 24 hr urine test again but how will it help if we don't know the exact day he will have diarrhea? Would the blood test for serotonin help detect anything?
I would appreciate any advice anyone has. I am very worried that this is possible carcinoid (if his symptoms don't improve).
Thank you.

RE: Possible Carcinoid Syndrome

by NETCancerBlog on Tue Aug 02, 2016 09:55 AM

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wow, that's a riddle.  Ive never heard of anyone who has Acromegaly and Carcinoid but there are definately similarities with the disease (e.g. release of excess hormones) in addition to the hormone therapy.   As for the flushing, that could be a numnber of things but the 5HIAA is negative. That said, certain carcinoids (hindgut) would not release masses of serotonin and possibily could have a negative 5HIAA.  Personally I would go to your Acromegaly specialist and provide him with this summary, push for at least a CT scan as 80-90% of the time, this will show up caricnoid tumours if they are large enough.  Lanreotide should supress symptoms of carcinoid and it also has an anti-tumour effect.

I actually have metastatic NETs nad I also have a mild Rosacea problem and am aware of the issues with various treatments including doxycycline (it worked in the short term but it always came back) - mine is small pustules in creases of nose rather than a flushing type experience. From memory, it didnt cause any abdominal issues.  I also had metrogel (spelling).   I have a document listing all the other possible causes of flushing which I could send to you privately

RE: Possible Carcinoid Syndrome

by Rose95 on Tue Aug 02, 2016 11:38 PM

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Thank you so much for your reply, I really do appreciate it.  When never heard of carcinoid tumors/syndrome until this all came up. Very ironic how he is on the same treatment for his pituitary tumor.

I also did read that the flushing is not even caused by serotonin but by incresed kallikrein - not sure how that is tested, can't find much about it.

I'm pretty sure his Endocrinologist will say he's fine. He's kind of hard harded when he gives an answer.. can't really argue with him. He said if the urine came back ok, then he's fine.  Of course we will bring it up if this continues.

3 1/2 years ago (for another medical issue) he had a CT (abdomen and pelvis) and an MRI (soft tissue pelvis) and the results were normal on both of them. His symptoms only just started but would these have shown any tumors or was it too long ago? 

Also a quick question if you would know.... when someone has carcinoid syndrome are there any other abnormalities you would see on like a CBC, liver function test, etc. (he gets multiple blood work done every 6 months)

Thank you again..

RE: Possible Carcinoid Syndrome

by NETCancerBlog on Wed Aug 03, 2016 09:56 AM

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NETs are slow growers and can be annoyingly small.  You're right about the hormones, serotonin is not the only culprit. I've heard of a "fasting gut hormone" test which tests for a number of them but I've never had it.   Re bloods, difficult one as it would be different for the various manifestations of the disease.  Hemoglobin, ALP/ALT/ALK, perhaps ones to look at.  Chromogranin A measures tumour bulk (that's a specialist one for checking NETs in general).  These arfe more for the effects of the tumour, 5HIAA is more for measuring functionality (mainly excess secretion of serotonin - 5HIAA is a product of serotonin).

RE: Possible Carcinoid Syndrome

by beingcelestial on Thu Aug 04, 2016 04:11 AM

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i suggest you look at the www.carcinoid.org website. you can learn much vital information about NETs carcinoid there. your husband could have a carcinoid. there are very specific tests and scans to detect it. the site contains info about that. carcinoids can be as small as grains of sand and few or many. the key is to find the primary and remove it, if possible. carcinoid can spread and there can be more than one primary. 

RE: Possible Carcinoid Syndrome

by LauriG on Sat Sep 17, 2016 12:20 PM

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Hi Rose, if your husband had a pituitary tumour and symptoms of carcinoid, it may be a good idea for him to be checked for MEN1. If he had MEN1 I don't know if he would get to the age he is without further tumours being found, but I would still ask the question. There is a genetic test available for MEN1.

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