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Kimberly
@sebley12

Posts: 85
Joined: Aug 02, 2011

Carcinoid Syndrome & Autoimmune Diseases.

Posted by @sebley12, Aug 10, 2016

My BFF has been diagnosed with Carcinoid Syndrome 3 yrs ago and also has Shingles and Multiple Sclerosis and Neuropathy. She use to weigh around 158 pds and is now down to 106. She has been juicing and drinking this Kegan water to benefit her health. She is gluten free and only eats organic. Has anyone else experienced this kind of cancer?

REPLY

Your question is one that is hard to answer outright. You should begin with the formulation of a baseline. Such as a complete Blood Panel to see what your blood has or hasn’t got in it. From that point note your most p and what it was prescribed for; Note that with the times, events, activities and even tests to check out various speculative items. Cancer markers, etc. Note any medicines prescribed as well as supplemental ones can often point out deficiencies. Then it is often a process of elimination. How is your rest, your diet, your normal being? Was there a time or instance that you first notced a change? Put them all together with an experienced doctor, Hematologist, Oncologist and see where your system lies or best fits.

irvkay312

Liked by Kimberly

@sebley12 I have had three carcinoid lesions removed since 2003, however, I have never experienced carcinoid syndrome with the typical symptoms that go with it. However, if you would like to get some more info there are some Carcinoid, also referred to as “NET” (stands for neuroendocrine tumor) organizations. In Michigan, where I live, there is a support group and if you “google” the topic you might find a group in your area. Carcinoids, or NETs, are certainly rare and fortunately they are slow growing. Here is information from Mayo’s website: http://www.mayoclinic.org/diseases-conditions/carcinoid-syndrome/basics/definition/con-20027127
Has your friend had surgery? What about blood tests or an Octreoscan? Keep in touch and share information as you feel comfortable. Teresa

I have carcinoid cancer stage 4 diagnosed 2 years ago with tumors spread to liver and right kidney. I have had a right hemicolostomy. The only scan that can see my tumors are octreoscan. You need a cancer doc that knows what these are and schedule them for you. There are no carcinoid specialists in the city I am from and I would have to go to LA, Phoenix or salt lake to find one. I am currently on sandostatin shots once a month and those are working well for me. thankfully my doc has enough knowledge of this cancer to know what to do and as this progresses would be willing to listen to the specialists on how to treat. It is very important to self educate yourself and if no specialist available, find a cancer doc that is willing to answer questions and find answers

@joannem Hello and welcome to Mayo Connect. Yes, carcinoids are an unusual type of cancer and from experience, I know that they are hard to detect outside of the Octreoscan. It sounds like you have educated yourself about this rare disorder. I’m glad to hear that you have a knowledgeable doctor in the area where you live. Has your doctor run the blood tests like Serotonin and Chromogranin A (or G) levels? My carcinoids have all been in the upper digestive tract and have been originally found by EGD, however, I have had the Octreoscan. Were you aware the NIH has clinical trials using the Galliium 68? You can check their website if interested. This type of scan picks up more than the Octreoscan does. Please feel free to share with us more of your story as you feel comfortable (such as length of time of your carcinoid diagnosis, surgeries, etc.). We are looking forward to getting to know you better. Teresa

@joannem

I have carcinoid cancer stage 4 diagnosed 2 years ago with tumors spread to liver and right kidney. I have had a right hemicolostomy. The only scan that can see my tumors are octreoscan. You need a cancer doc that knows what these are and schedule them for you. There are no carcinoid specialists in the city I am from and I would have to go to LA, Phoenix or salt lake to find one. I am currently on sandostatin shots once a month and those are working well for me. thankfully my doc has enough knowledge of this cancer to know what to do and as this progresses would be willing to listen to the specialists on how to treat. It is very important to self educate yourself and if no specialist available, find a cancer doc that is willing to answer questions and find answers

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Welcome @joannem. I’d like to invite you to join a group of members talking about carcinoid cancer here on Connect http://mayocl.in/2cK4PdN

@hopeful33250

@joannem Hello and welcome to Mayo Connect. Yes, carcinoids are an unusual type of cancer and from experience, I know that they are hard to detect outside of the Octreoscan. It sounds like you have educated yourself about this rare disorder. I’m glad to hear that you have a knowledgeable doctor in the area where you live. Has your doctor run the blood tests like Serotonin and Chromogranin A (or G) levels? My carcinoids have all been in the upper digestive tract and have been originally found by EGD, however, I have had the Octreoscan. Were you aware the NIH has clinical trials using the Galliium 68? You can check their website if interested. This type of scan picks up more than the Octreoscan does. Please feel free to share with us more of your story as you feel comfortable (such as length of time of your carcinoid diagnosis, surgeries, etc.). We are looking forward to getting to know you better. Teresa

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I would have to pull out my reports to see exactly what tests she runs. I know all about all the other tests as There is a local support group that I belong to and many of them are trying to get these tests. I am the “most well” of all the members. Some of them have had a hard time getting treatment that was given to me almost immediately. I feel like a first grader learning all these terms. I know that I have had symptoms for at least 15 years and was originally diagnosed

@hopeful33250

@joannem Hello and welcome to Mayo Connect. Yes, carcinoids are an unusual type of cancer and from experience, I know that they are hard to detect outside of the Octreoscan. It sounds like you have educated yourself about this rare disorder. I’m glad to hear that you have a knowledgeable doctor in the area where you live. Has your doctor run the blood tests like Serotonin and Chromogranin A (or G) levels? My carcinoids have all been in the upper digestive tract and have been originally found by EGD, however, I have had the Octreoscan. Were you aware the NIH has clinical trials using the Galliium 68? You can check their website if interested. This type of scan picks up more than the Octreoscan does. Please feel free to share with us more of your story as you feel comfortable (such as length of time of your carcinoid diagnosis, surgeries, etc.). We are looking forward to getting to know you better. Teresa

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opps i was originally diagnosed with crohns disease. Getting my 6 month o-scans next week and will be able to update when I see my doc at the end of the month. I will mention the tests that you mentioned to get a better understanding of them. I no longer suffer with much diarrhea since I started the sandostatin. I take 2 Imodium every morning and most of the time that is good enough but I am allowed 8 a day. I have never had to take more than 4. I am very happy with that as after my surgery for about 6 months, it was constant every day. I have improved so much in the last 2 years and considering where I was, I am doing very well. I suffer mostly from fatigue which limits how much I can get done it a day, sometimes not much.

@hopeful33250

@joannem Hello and welcome to Mayo Connect. Yes, carcinoids are an unusual type of cancer and from experience, I know that they are hard to detect outside of the Octreoscan. It sounds like you have educated yourself about this rare disorder. I’m glad to hear that you have a knowledgeable doctor in the area where you live. Has your doctor run the blood tests like Serotonin and Chromogranin A (or G) levels? My carcinoids have all been in the upper digestive tract and have been originally found by EGD, however, I have had the Octreoscan. Were you aware the NIH has clinical trials using the Galliium 68? You can check their website if interested. This type of scan picks up more than the Octreoscan does. Please feel free to share with us more of your story as you feel comfortable (such as length of time of your carcinoid diagnosis, surgeries, etc.). We are looking forward to getting to know you better. Teresa

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I have also found that taking a probiotic is very helpful

@gaylejean Thanks for that suggestion. Teresa

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