Mayo Clinic Connect
I would like to be in voplved in carcinoid cancer only as that is what I have
@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
Liked by Colleen Young, Connect Director
@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
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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.
Liked by Teresa, Volunteer Mentor
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.
Yes, @joannem, Carcinoid cancer is difficult to explain. I always say that it is a rare form of slow growing cancer and leave it at that. I’m interested in your support group. What area do you live in? We have one group in Michigan, however, it is a 3 hour drive from where I live. There is so much that we can learn from each other.
Liked by Tresjur
The number of members talking about carcinoid and neuroendocrine tumors has grown so much that it was time to move the discussions into a group dedicated to Neuroendocrine Tumors (NETs). Please visit the new group page here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ and follow the group by clicking + FOLLOW in the corner of the group description.
Everything else will continue to work as it always has. You will continue to get email notifications and connect with the people you know, and be able to welcome new members to the group.
Thank you to @hopeful33250, volunteer patient mentor, for helping us form this group of patients helping patients.
To all of our NET members who live in or near the Minnesota area, I wanted you to know about a Mayo NET Specialist who will be speaking in November at a Gilda Club Meeting. Here is the information:
Thorvardur R. Halfdanarson, M.D whom trained under Thomas D'orisio at University of Iowa and is now at the Mayo Clinic will be speaking on the latest developments and treatments for Neuroendocrine Cancer at Gilda's Club in Minnetonka, MN on Thursday, November 15, 2018 from 5:00 – 6:30 PM.
Gilda’s Club Twin Cities
10560 Wayzata Blvd
Minnetonka, MN 55305
My last experience (the best yet) I went to U of Michigan. They have a doctor there who removed a small lesion through an endoscopy procedure. U of Michigan also has a doctor who specializes in carcinoids, his name is Del Valle. I have an appointment with him next week. I believe it is important to be connected with a good teaching/research institution when you are dealing with something unique or rare, the hospital in your neighborhood might not be your best choice. It may involve some extra driving but it is worth the time and expense.
I can second Teresa’s advice. My rectal carcinoid was discovered by accident during my first colonoscopy. But that doc and three specialists were wrong about the disease and prognosis. Five years later I found a specialist in another state who correctly predicted my type of carcinoid might return, when and where. Now there are more specialists than just the three I learned of in 2005. You MUST find a specialist and then thoroughly research his/her credentials and experience. You may have to travel, but it is your life.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, Tresjur
It is so refreshing to see the conferences, support groups, blogs and available NET specialists that are now available. So very different from when I was diagnosed back in 2008. I felt so alone back then and had no idea of the how/what/who. If I was diagnosed today, with what is now available for research and understanding, I would have made a difference choice than in 2008. I am so pleased with the continuing increased awareness for the NET community.
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, Teresa, Volunteer Mentor, Martin Jensen, Volunteer Mentor
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