HELLO and trials?!

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HELLO and trials?!

by ScarletTears on Thu Jun 26, 2008 12:00 AM

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Hi, I just found this board and joined, because the other MBs I looked into had NOTHING about my cancer of interest, and even the Senior members had no clue.

My father is 65 and was diagnosed two years ago with Neuroendocrine Carcinoma/Carcinoid Syndrome.

I will be posting more on this topic, but first I want to make sure that there is someone, or multiple peoples out there who know a little about the illness?

I suppose it is rare and that is why I am runnning into a lack of info.

I have all the clinical info I need, but not a lot of practical info, including not too much in the way of personal experiences posted.

Thanks in advance,

Concerned Daughter

RE: HELLO and trials?!

by debbysewing7 on Fri Jun 27, 2008 12:00 AM

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It's good of you to research this and try to find info for your father. I've noticed that this isn't a real active forum but the people that have joined either have Carcinoid or are caregivers/relatives so someone should be able to help you with info.

What is it that you're looking for? On the Carcinoid.org site there is a place that gives you links to different websites of people that share their experiences with Carcinoid. One off the top of my head is Susan Anderson, I think she is one of the original posters regarding Carcinoid that has her own website.

The symptoms can vary a lot depending on treatments, where the tumors are, age, whether a patient has the syndrome, etc. And as you've probably read, the different treatments have different side effects too. If you tell us what's going on with your father and his cancer/treatments, someone on here might be going through the same thing or be able to tell you things they've done to help alleviate some of the symptoms.

~ Debby

RE: HELLO and trials?!

by shitzu on Fri Aug 01, 2008 12:00 AM

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I think this is a good site, better than many I have looked at. Carcinoid is a rare type of cancer but becoming more heard of. My husband has been diagnoised over 6 yrs. and probably had it @ least 2-4 yrs. prior to diagnoised. He has done all treatments available in  USA and several trials too. We are now going to go over to the Netherlands for treatment. (Lutetium 177-not available here). This cancer can be managed, although not cured. The good thing about this cancer is that it is slow growing and life expectancy is long. I wish you the best. Any questions, please submit and hopefully someone can help.
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