Learn About NETs and monthly meetings

Posted by Teresa, Volunteer Mentor @hopeful33250, Nov 15, 2021

There are many opportunities to learn more about this very elusive and hard-to-diagnose disorder called Neuroendocrine Tumors (NETs)/Carcinoids. When a new learning opportunity becomes available it will be posted here.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

I read on some of the discussions that there is a NETS support group on here? Is this true and if so, how do I get info? I really really need this support. TY all!

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@gastrogirl

I read on some of the discussions that there is a NETS support group on here? Is this true and if so, how do I get info? I really really need this support. TY all!

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Hello @gastrogirl

Yes, Mayo offers a monthly support group. It will be held this Thursday. Here is the link that will give you the information on registering.
https://connect.mayoclinic.org/comment/743146/

Looking forward to having you join us on Thursday!

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Good Morning!

I was wondering if anyone knew if there would be any more upcoming zoom support meetings? i unfortuently missed the last one. i would love to attend one especially since i have to wait another two months for my new GI appointment.

Thank you,
Eileen

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@eileenb1022

Good Morning!

I was wondering if anyone knew if there would be any more upcoming zoom support meetings? i unfortuently missed the last one. i would love to attend one especially since i have to wait another two months for my new GI appointment.

Thank you,
Eileen

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Hi Eileen,
You can see all the upcoming support groups meetings by clicking Events at the top of the page.

See Events here: https://connect.mayoclinic.org/events/

The next NETs Zoom meeting is Oct 6 at 5:30 ET. Meetings are monthly, first Thursday every month from 5:30 to 7:00 p.m. Eastern time.

- Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-117/

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@colleenyoung

Hi Eileen,
You can see all the upcoming support groups meetings by clicking Events at the top of the page.

See Events here: https://connect.mayoclinic.org/events/

The next NETs Zoom meeting is Oct 6 at 5:30 ET. Meetings are monthly, first Thursday every month from 5:30 to 7:00 p.m. Eastern time.

- Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-117/

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Hi Colleen,

Thank you so much for letting me know!

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Hi I’m Charlotte and I just became a member , I’m living with Net my first one was in my small intestine , diagnosed back in 2011 after surgery , I had cat scan annually to monitor the activity and it was uneventful for years until this year my cat scan showed one on my liver and 1 on each ovaries so now I’m getting the sandostanin shot it’s been a struggle because I’ve been having severe constipation with the shots so my oncologist lower my dose and I hope and pray my body can tolerate it ,

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Hello All:

Perhaps you are new to a NETs diagnosis, or you have been on the NETs journey for a while. Either way, please join the October NETs support group. You must register in advance in order to receive the Zoom link. The meeting information for the October 6 meeting is listed below. Please join us!

Neuroendocrine Support Group Meeting
Thursday October 6, 2022, 5:30pm-7:00pm EST
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi
After registering you will receive a confirmation email containing information about joining the meeting

For Questions or Concerns please call 904-953-6831

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@hopeful33250

@kreamks1 @marilyn2525 @benr @jadedprincess @katherinepearl350 @northwoodsbarb @sturns @jay1225 @sophiarose @pjsheridan2022 @ahtaylor @kjstein @laurell410 @kate12345 @tatteesmom3 @netpatient @rodelba @jhilbish @captain1950 @felo @mwalum @lenorahaston @mfgw @cvb @phoebeghostwriter @tracyfurtiscaudle @dbmenger @amariewilkinson @mydadhadnetpancreatictumorandwhipple @immmm @gulzar @mkmm @eileenb1022 @cu2 @stan123 @ceavce @carcinoid23462 @harley4650 @sturns @gastrogirl @markmark007 @char1962 @gulzar @coco1 @james8117 @browndog @carolc66 @gene0552 @melmangen @christine714 @jay1225 @spartan @jatx25 @liz925 @melmangen @smart1 @ce1b @carrie55 @heidiwat @mcrey1 @littlecrown1966 @kim1965

Hello All:

Perhaps you are new to a NETs diagnosis, or you have been on the NETs journey for a while. Either way, please join the October NETs support group. You must register in advance in order to receive the Zoom link. The meeting information for the October 6 meeting is listed below. Please join us!

Neuroendocrine Support Group Meeting
Thursday October 6, 2022, 5:30pm-7:00pm EST
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi
After registering you will receive a confirmation email containing information about joining the meeting

For Questions or Concerns please call 904-953-6831

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Thank you!

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@char1962

Hi I’m Charlotte and I just became a member , I’m living with Net my first one was in my small intestine , diagnosed back in 2011 after surgery , I had cat scan annually to monitor the activity and it was uneventful for years until this year my cat scan showed one on my liver and 1 on each ovaries so now I’m getting the sandostanin shot it’s been a struggle because I’ve been having severe constipation with the shots so my oncologist lower my dose and I hope and pray my body can tolerate it ,

Jump to this post

Hi @char1962

I hope you can join the meeting on October 6. If you can, be sure and register! I look forward to seeing you.

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Hello
@kreamks1 @marilyn2525 @benr @jadedprincess @katherinepearl350 @northwoodsbarb @sturns @jay1225 @sophiarose @pjsheridan2022 @ahtaylor @kjstein @laurell410 @kate12345 @tatteesmom3 @netpatient @rodelba @jhilbish @captain1950 @felo @mwalum @lenorahaston @mfgw @cvb @phoebeghostwriter @tracyfurtiscaudle @dbmenger @amariewilkinson @mydadhadnetpancreatictumorandwhipple @immmm @gulzar @mkmm @eileenb1022 @cu2 @stan123 @ceavce @carcinoid23462 @harley4650 @sturns @gastrogirl @markmark007 @char1962 @gulzar @coco1 @james8117 @browndog @carolc66 @gene0552 @melmangen @christine714 @jay1225 @spartan @jatx25 @liz925 @melmangen @smart1 @ce1b @carrie55 @heidiwat @mcrey1 @littlecrown1966 @kim1965 @annmarie408 @fightinghopefully @nathanb1979 @gneiss50 @sandy23 @margaret12 @kathryncd @sturns @sandy23 @liz925

If you are new to a NETs diagnosis or if you have been on the NETs journey for a while, the NETs support group is a great way to learn and share. You must register in advance in order to get the Zoom link.

The Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time by the Florida campus of Mayo Clinic. You can join the meeting virtually using Zoom. Each meeting features an invited guest speaker. Topics include symptom and disease management as well as the emotional, physical, and financial impact of disease.

Please click the link to register in advance for this meeting:

https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi

After registering, you will receive a confirmation email containing information about joining the meeting.

Location: Zoom online meeting

Contact: Candace Porter, M.S.W., L.C.S.W.
(904) 953-6831; @candacep

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