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audra (@ajnaudra)

Carcinoid Cancer and working

Neuroendocrine Tumors (NETs) | Last Active: Jul 31, 2018 | Replies (32)

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@ajnaudra

I forgot to mention there are no support groups here because it’s somewhat secluded (like the edge of the earth). Although my husband is extremely supportive, I feel other people who share this cancer would be helpful. I was told after the surgery I could live up to 10 years and perhaps 5 after it hits the liver. I’m not sure what to think about that info……it’s like I have a ticking timebomb looming over my head ready to explode. I am very confused and truly look forward to opinions and experiences anyone has.

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Replies to "I forgot to mention there are no support groups here because it’s somewhat secluded (like the..."

@ajnaudra There is one support group in Michigan – not close by – but in Grand Rapids. Have you talked with Dave Vickery, who is the support group leader there? He has an abundance of materials that he will send you with great information about carcinoid issues. The support group only meets once a year, however, you can get on their email list and connect with others online.

Here is the information on how to contact Dave, you will enjoy meeting him online or by phone. He has had METs to the liver much longer than 15 years. Here is his contact info, Michigan Carcinoid Group (MCG)
The main theme of this support group is “Sharing Information, Caring for Each Other.” MCG is a casual friendly group; all persons interested in carcinoid or NETs are welcomed. Specific suggestions for agenda items are encouraged.
Contact: Dave Vickery; dave.vickery2008@gmail.com
Tel: 616-450-0842 (cell), 616-447-8550 (home)

I would also like to invite @tresjur into this conversation as she has had METs to the liver for a number of years as well and she also lives in Michigan.

Teresa

Again, thank you so much for this info Teresa. I’m feeling a bit better knowing I can speak with others afflicted with this disease. Hugs to you!

@ajnaudra Audra: Hugs right back to you! Teresa