Carcinoid cancer: Want to meet others

@amyh2439 Hi Ruth Ann: It has been a while since we have heard from you. As I recall, back in the Spring you were doing some genetic testing as your daughter also had carcinoid cancer. How are you and your daughter feeling? Did the testing lead to any genetic predisposition to carcinoid cancer? We would love to hear from you and support you along this journey. Keep in touch and best wishes for the new year! Teresa

@joannem Hi JoAnne: You mentioned in your December post that you would be having some follow up tests in January. Have you had any of those tests yet? If so, please feel free to share with us how you are doing. We look forward to hearing from you. Best wishes for 2017. Teresa

No I have not been scheduled yet, should be notified soon. Usually it is a phone call from the lab saying to schedule. then I have t figure a 3 day schedule that I can dedicate to the tests I am nervous because I had a carcinoid syndrome happen to me a few days ago and doc said I should not have those syndromes happening to me now. It was a few days before my monthly shot, so maybe that caused it.

Hello @joannem, Thanks for checking in with us. I am sorry to hear of your carcinoid syndrome experience. I'm sure that (and your doctor's response) was disheartening. Please keep us posted on how you are doing and when you begin your testing we would like to be supportive of you. Blessings! Teresa

Are you talking about flushing episodes? When were you diagnosed with NET? Since my diagnosis in 2002, I have had several incidents.

I talking about the sudden sugar drops that make you so weak that you almost can't stand up' they are similar to the sugar drops that diabetics have. my diabetic friend told me how to deal with them. you need carbs and protein so a peanut butter sandwich helps. My carcinoid group leader told me to keep glucose tablets with me away from home because that also helps It had been a long while since I had one, so it shook me up. I get nervous when it gets close to scan time and that episode did not help my nerves. I am in pretty good shape right now and I don't want to start having serious problems again.

Hi @joannem, Thanks for giving us some further information. I was not aware of that symptom before. It sounds like a frightening experience. It is good to know that you have a plan in place to treat this kind of experience.

Hi @gaylejean. How long do the flushing episodes last? Are they all day or just a few minutes? Is there anything in particular you can do to get through them?

Mine usually last several seconds to less than a minute. I can have 1-3 in a month, or even week, and then none for months. I don't know of anything you can do but I don't have to look in the mirror to know it is happening - you can just feel it.

I don't understand the mechanics of it I know it is usually caused by a food that the tumors react to. one of my triggers is avocados but most of the time I cannot put my finger on it. I was instructed to take my sugar when it happened and sure enough, it was low. Probably some release of hormones of some kind. It is nice that my group leader has a lot of knowledge and is a very smart man who can explain things. It is so hard t explain things to people who want to know about carcinoid I just recently told my niece to look it up online cause so much of the time I am at a loss to how explain it.