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Welcome to Our New NETs Group!

Posted by @hopeful33250, Jan 20, 2017

Hello @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes. As this group has grown, not only in our members, but in our sharing and communicating with each other, Mayo Connect has given us our own group. If you look at the Tab labeled “Discussions” you will see many topics that you can respond to and discuss. We should also, always feel free to start a new discussion when our need arises! Let’s pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

REPLY

“Pull up our chairs in a circle…” What a lovely way to start the discussion Teresa!
I also encourage each of you to +Follow the NETs group so that you’re included in the Members list http://mayocl.in/2k9K2BJ

Yes, I would invite you all @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes. to “click” on the “Following” icon in the NETs group so that we can keep in touch whenever someone posts a question or concern. This will help keep us more engaged with each other. Remember: We are stronger together!

Nice to see another group! I started on long-acting Octreotide at the end of November and am doing really well.it has been a miracle drug for me–fatigue and nausea completely gone. I never did the self-injection because my first two tries of that produced a mild allergic reaction–which the hospital pharmacist has seen more with the short-acting than the long.

@wordnoid

Nice to see another group! I started on long-acting Octreotide at the end of November and am doing really well.it has been a miracle drug for me–fatigue and nausea completely gone. I never did the self-injection because my first two tries of that produced a mild allergic reaction–which the hospital pharmacist has seen more with the short-acting than the long.

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@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

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

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!

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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

@wordnoid

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!

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

@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

@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!

@wordnoid

Nice to see another group! I started on long-acting Octreotide at the end of November and am doing really well.it has been a miracle drug for me–fatigue and nausea completely gone. I never did the self-injection because my first two tries of that produced a mild allergic reaction–which the hospital pharmacist has seen more with the short-acting than the long.

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

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

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

@lucci50

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

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@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

@colleenyoung

“Pull up our chairs in a circle…” What a lovely way to start the discussion Teresa!
I also encourage each of you to +Follow the NETs group so that you’re included in the Members list http://mayocl.in/2k9K2BJ

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I am having an emotional issue right now. We all know that from time to time our doctors will leave and we will get assigned a new doctor. That is has happened to me recently and I am very nervous about starting with a new doctor. I think the problem is each doctor has their own protocol on how they handle treatment and I am afraid that this new Doctor will change things. I won’t know until May 15 and I am very stressed about it. There are no Net doctors in Las Vegas.

@colleenyoung

“Pull up our chairs in a circle…” What a lovely way to start the discussion Teresa!
I also encourage each of you to +Follow the NETs group so that you’re included in the Members list http://mayocl.in/2k9K2BJ

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@joannem Thanks for checking in with us, Joanne. I understand the emotional component of having to change doctors. Tell us a little bit about the protocol you are currently following. Does this new doctor come by recommendation from your previous doctor? If there are changes he/she wants to make to your current treatment program please feel free to mention your concerns and get an explanation. If your current treatment has been working well for you, there might not be any changes so try to worry too much until you have an opportunity to meet this new doctor on May 15. Always remember, you can seek a second opinion if your concerns are not addressed.
Has anyone else had a problem with a change of doctors? Teresa

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