Welcome to the NETs Group! Come say hi.

@lucci50 I see Dr. John Del Valle at University of Michigan. Dr. Del Valle does not do surgery, however, he is considered quite knowledgeable in the area of NETs. Here is the U of M website that introduces you to Dr. Del Valle http://www.uofmhealth.org/profile/137/john-del-valle-md. Best wishes! Teresa

I have just been treating with sandostain shots once a month....the oncologist checks through mri to see how i am doing....i have had a reccomendation for University of Michigan. They say that there is a specialist there....if someone has their name i'd appreciate it

Hello all, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4. It has been a while since I have heard from you. Let's pull up in a circle and check in with each other. Do any of you have any special concerns that you would like to share? What about any new treatments or test results? The issue of Neuroendocrine tumors had a lot of publicity in February. If you learned something new that you would like to share, let's do that as well. I'm looking forward to hearing from you. Teresa

How can you possibly self-inject into the gluteal muscle? I would never begin to try.

@lucci50 Hello Ralph: I was thinking about you as you mentioned you lived in Michigan as well. Did you contact the doctor at Univ. of Michigan yet? Please check in with us and let us know how you are doing. Best wishes for the new year!

@derekd Hello Derek and happy new year! It has been a while since we have heard from you. How are you doing? We would love to have you check in with us and let us know how you are doing. Teresa

@wordnoid I'm glad that you have found such good treatment. I've heard about the doctor in Iowa before.

Hello @wordnoid I get the octreotide shots every 28 days I am a NED but I know that it only means that my tumors have shrunk so much that the O scans cannot see them. My doc said that I should not get carcinoid syndrome any more but I do, but not as often. I know that those little devils are still there and they will probably show if I had a GA68 scan, Right now I am just enjoying my better health

Yes, every 28 days. I cannot even feel the injection. It was only after I had the Ga68 scan in October that anybody reluctantly admitted I might still have tumors present. The specialist at Iowa said to try the Octreotide--and if it dealt with my symptoms, that gave us our answer!

@wordnoid So good to hear from you! I'm glad that your new treatment is providing such good results for you. Is this the monthly injection that others have discussed? As I recall, that is an every 28 day injection. Tell us more about it. Teresa