Carcinoid Syndrome

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Carcinoid Syndrome

by TurtleShel on Mon Nov 30, 2015 11:34 PM

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I was told by my Family Doctor I had carcinoid syndrome. My serotonin levels were 350. Last year my OBGYN Oncoligest removed several dermoid cysts. At that time my levels were at 750. I have been put off by so many doctors over the years I just quit going. The pain in my sides is getting worse. I am being sent to an Oncologist as soon as I find out who my new insurance is. Promotion at work gives me better insurance at a lower cost. I am glad to hear I am not crazy. The Doctors before this new one, made me believe I was just making up all my symptoms. I know my body. I know something is not right. What questions do I ask? What test do I need done? I do not know what to expect. Just tired of being sick n tired. Thank you, Shelli

RE: Carcinoid Syndrome

by DalAnderson on Mon Nov 30, 2015 11:58 PM

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You can read up on this on the Carcinoid Cancer Foundation website. Good for you for listening to your body. Also www.nanets.net , look for their Consensus Guidelines. If you're late diagnosed, you're not alone. I would highly recommend seeing a NET cancer specialist of which there are maybe 20 in the country. Tests: ChromograninA, pancreastatin (performed at Inter Science Institute -also read their book online), serum serotonin, 5-Hiaa. An OctreoScan imaging. If surgery is done, be sure to obtain copies of your pathology results. They are telling.  There are several forums of patients on Facebook, some moderated by experienced oncologists /  physicians. 

RE: Carcinoid Syndrome

by DalAnderson on Tue Dec 01, 2015 12:03 AM

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You can read up on this on the Carcinoid Cancer Foundation website. Good for you for listening to your body. Also www.nanets.net , look for their Consensus Guidelines. If you're late diagnosed, you're not alone. I would highly recommend seeing a NET cancer specialist of which there are maybe 20 in the country. Tests: ChromograninA, pancreastatin (performed at Inter Science Institute -also read their book online), serum serotonin, 5-Hiaa. An OctreoScan imaging. If surgery is done, be sure to obtain copies of your pathology results. They are telling.  There are several forums of patients on Facebook, some moderated by experienced oncologists /  physicians. 

Primary treatment is removal of the primary tumor. Then it becomes management with monthly injections of one of two long acting somatoststin.analog ue treatments AND / or a short acting injection of Octreotide to hold back syndrome caused by release of extra serotonin. You'll want to also do an annual EKG towatch for heart damage. Often iron and B12 levels drop, especially in women. Best wishes. Educate. Educate. 

RE: Carcinoid Syndrome

by TurtleShel on Fri Dec 04, 2015 01:18 AM

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Thank you. Family Dr. trying to send me to The James in Columbus, Ohio. Has any one ever tried holistic methods? I need to see my options. I do not want to be Dissected. Like a lab rat.

RE: Carcinoid Syndrome

by DalAnderson on Fri Dec 04, 2015 05:37 AM

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Some have tried without much success. Studies show your survivability improves dramatically if the primary tumor site is located and removed.  This is typically a long battle of years of managing. There is no cure to neuroendocrine cancer short of finding it early and removing it all.  Most are late diagnosed and don't have that luxury. 

I know... not what you want to hear, but I'm giving it to you straight.  I was Dx'd with a midgut (small bowel) NET (then called carcinoid). I had 18" removed and was told I was cured. I didn't go to a NET specialist or an oncologist that had seen more than a handful of NET patients.  Four years later it had metastasized to my liver. At this point I'm inoperable and waiting for new treatment options being available. 

RE: Carcinoid Syndrome

by DalAnderson on Fri Dec 04, 2015 05:45 AM

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The Carcinoid Cancer Foundation shows Dr. Goldberg at The James specializing in colorectal NETS, which probably isn't your tumor location, but it's a start. http://www.carcinoid.org/patient/treatment/find-a-doctor?sta

To be on this list and highlighted in light blue, the physicians have to have had 10-20 years seeing NET patients, published, and treated over 100 patients. I don't know what state you're in, but you might want to look over that list.  The closest top notch Onc to Ohio that I know of is Dr. O'Dorosio in Iowa City, IA or Lowell Anthony in Lexington KY. 

RE: Carcinoid Syndrome

by TurtleShel on Fri Dec 04, 2015 09:31 AM

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That is where I will start. I live in Ohio. My Insurance sucks. I can only go to The James in Columbus. If I go someplace else I will need to pay for all my care out of my pocket. As a widower I live week to week as it is. My insurance cost me $399.00 a month. I need to pay the first $6000.00 out of pocket. Then they cover 80%. My hands are tied unless I move. Find a new temp. job. Work for a year, then I could get FMLA.

RE: Carcinoid Syndrome

by TurtleShel on Fri Dec 04, 2015 09:47 AM

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I feel this is where I am. The serotonin levels are not being processed by my liver. They are High. I do not want to die. Yet the reunion with my husband will be delightful. I place my life in Gods hands. I do want the pain to go away. Anti-dihereha meds are alowing me to work for now. I get confused sometimes. Flushing is really bad. The weight gain is horrible. 40 lbs in a year and a half. All belly area. I still do not want to be a lab rat.

RE: Carcinoid Syndrome

by LindaTrue on Sat Jan 02, 2016 12:06 PM

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I have had carcinoid syndrome for about 5 years now and have been having 30 mg. time release Sandostatin injections every month. I also inject myself with small amounts of instant acting Sandostatin when I feel symptoms returning (like flushing, stomach pain, diarrhea), or If I anticipate a stressful situation coming up, like going to the dentist or traveling. (I bring syringes and sandostatin vials along in a cooler for traveling.) The Sandostatin really helps with symptoms, especially the flushing. I also take Norco for pain. (I really don't like being dependant on medications, but I also want to feel as good as I can, and be able to do things I enjoy, and I feel the medications help with my quality of life.) Also available are other medications, similar to Sandostatin, (Octreotide analogs) which can be used when Sandostatin itself is no longer effective. Even so, there are times, when I feel upset about dying, sad, depressed... Hang in there, TurtleShel: Try to go to a superspecialist in a big city who deals regularly with neuroendocrine cancer, then find a local oncologist near where you live to carry out orders from the superspecialist. I wish you the best!

RE: Carcinoid Syndrome

by TurtleShel on Sun Jan 03, 2016 05:27 PM

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Linda. Thank you.
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