Panel Discussion on NETs/Carcinoids

Posted by Teresa, Volunteer Mentor @hopeful33250, Feb 21, 2017

Hello everyone, @amyh2439 @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @upblueeyes @ahtaylor @heidilynn4 @tresjur @colleenyoung @smness, I just received another email regarding a panel discussion on NET/Carcinoids that is being presented on Feb. 28, which is Rare Disease Day. It comes from Arizona and if you live in that area you can attend in person, but for the rest of us there is a way to watch it over the internet. Here is the website where you can register and/or get more information: It is really great that our rather rare disorder is getting a lot of attention this year. Teresa



@lucci50 Your welcome! I’ll be looking forward to hearing from every one after they watch these programs. I’m looking forward to gaining new information!


Me too

Curious what the rest of you thought about this webinar? I learned a LOT and was surprised to find that my doctor was actually one of the panelist! (Gene Woltering) I’m even more excited about the newer Galium 68 scan, and that they confirmed some of what you all said about starting treatment to address symptoms in case where tumor hasn’t yet shown up on scans. In case you missed the live panel, you can watch the recording here:

@jenchaney727 Hi Jen: I agree! It was very informative for me. I learned a great deal. I have never had the symptoms the flushing, diarrhea, etc. and I learned a lot. Yes, the Gallium 68 scan does sound like a great tool I’m wondering how many others watched the panel either live or as a re-broadcast? Please share your thoughts with the group. Also, did anyone send any questions to the panel that were answered? @amyh2439 @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @dzerfas @lorettanebraska @wordnoid @upblueeyes @ahtaylor @heidilynn4 @tresjur @colleenyoung @smness. I was especially impressed with the new drug that was just recently approved by the FDA for treating carcinoid/NETs. Teresa
PS Jen, How very fortunate to have this doctor treating you. You must be very pleased with him.

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