1. < Neuroendocrine Tumors (NETs)
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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 4, 2023
In reply to @pavlina60 "Good afternoon! I thought I would share an exciting news. The 3 scientists who discovered quantum..." + (show)
@pavlina60

Good afternoon! I thought I would share an exciting news. The 3 scientists who discovered quantum dots and made possible sharp colors of our electronics and MEDICAL IMAGING ( see Dotatate) have been awarded the Nobel prize in Chemistry this year!

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That is great news, @pavlina60!

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Sherry | @bluebelle | Oct 6, 2023

I have stage 3 NET cancer and had a large tumor in my small intestine removed, a small one near that are, and one in a lymph node near there as well. I also had 10 additional lymph nodes removed with cancer cells. My PET scan is the 1st week of November with a follow up/ discussion of treatment. In the meantime I continue to lose weight, feel awful, chronic diarrhea, malnutrition…etc. How do I get through this healing stage and even begin my treatments? I’m really worried bc I’m so weak and I know that with treatment my weakness and fatigue may get worse. I just want to feel better and live somewhat of a normal life during all this. I’m pretty much tied to the house and near the bathroom…any advice would be greatly appreciated!!!

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1 reply
sophiarose | @sophiarose | Oct 7, 2023
In reply to @bluebelle "I have stage 3 NET cancer and had a large tumor in my small intestine removed,..." + (show)
@bluebelle

I have stage 3 NET cancer and had a large tumor in my small intestine removed, a small one near that are, and one in a lymph node near there as well. I also had 10 additional lymph nodes removed with cancer cells. My PET scan is the 1st week of November with a follow up/ discussion of treatment. In the meantime I continue to lose weight, feel awful, chronic diarrhea, malnutrition…etc. How do I get through this healing stage and even begin my treatments? I’m really worried bc I’m so weak and I know that with treatment my weakness and fatigue may get worse. I just want to feel better and live somewhat of a normal life during all this. I’m pretty much tied to the house and near the bathroom…any advice would be greatly appreciated!!!

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I started Massage PT to help with the pain I have from Lanreotide and Octreotide injections
Amazingly PT helped with my fatigue
I get off that table I feel like a million dollars
I am sure you know the whole food thing “small meals all day”
FYI the Dr gave me Ceron which actually made me worst don’t know if you are on that
This site is the best
There is always someone that has the same situation
I have learned one thing don’t over focus it makes things do much worst
I wish you well and hope you feel better soon
Good luck

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1 reply
Sherry | @bluebelle | Oct 7, 2023
In reply to @sophiarose "I started Massage PT to help with the pain I have from Lanreotide and Octreotide injections..." + (show)
@sophiarose

I started Massage PT to help with the pain I have from Lanreotide and Octreotide injections
Amazingly PT helped with my fatigue
I get off that table I feel like a million dollars
I am sure you know the whole food thing “small meals all day”
FYI the Dr gave me Ceron which actually made me worst don’t know if you are on that
This site is the best
There is always someone that has the same situation
I have learned one thing don’t over focus it makes things do much worst
I wish you well and hope you feel better soon
Good luck

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Thank you so much!!!! I actually have a PT apt on Monday and she does myofacial release and they have an infrared sauna (not sure if I should use this at this point as it can dehydrate you a bit). I took Pepto for a while, Imodium, prescription Lomotil, and I am now on Colestipol for bile acid diarrhea. I’m not sure it’s helpful yet. It’s very frustrating for sure but I know I will feel better eventually…I very impatient however and ten to get down about how bad I feel. I am working with a therapist from the cancer team to help with my emotions as well. Anyway, thank you again for reaching out and I hope you continue to do well!!! Happy Fall!

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1 reply
sophiarose | @sophiarose | Oct 7, 2023
In reply to @bluebelle "Thank you so much!!!! I actually have a PT apt on Monday and she does myofacial..." + (show)
@bluebelle

Thank you so much!!!! I actually have a PT apt on Monday and she does myofacial release and they have an infrared sauna (not sure if I should use this at this point as it can dehydrate you a bit). I took Pepto for a while, Imodium, prescription Lomotil, and I am now on Colestipol for bile acid diarrhea. I’m not sure it’s helpful yet. It’s very frustrating for sure but I know I will feel better eventually…I very impatient however and ten to get down about how bad I feel. I am working with a therapist from the cancer team to help with my emotions as well. Anyway, thank you again for reaching out and I hope you continue to do well!!! Happy Fall!

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All the best to you and your family

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shellster | @shellster | Oct 24, 2023
In reply to @colleenyoung "Hi @hope7, I can help connect you with other NET caregivers and patients. What type of..." + (show)
@colleenyoung

Hi @hope7, I can help connect you with other NET caregivers and patients. What type of neuroendocrine tumor does the person you're caring for have? Is this a recent diagnosis?

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Hi, My brother dx with Stage 3, 2b Cancer NET. Has 3 spots in lymph node and tip of pancreas.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 24, 2023
In reply to @shellster "Hi, My brother dx with Stage 3, 2b Cancer NET. Has 3 spots in lymph node..." + (show)
@shellster

Hi, My brother dx with Stage 3, 2b Cancer NET. Has 3 spots in lymph node and tip of pancreas.

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Hello @shellster and welcome to Mayo Connect. If you would like to post with other members of Connect who have NETs on the pancreas, please post to the following discussion, https://connect.mayoclinic.org/discussion/diagnosed-with-stage-4-pnet-metastasized-to-liver/

You will gain lots of support and information here from others who have been on this journey.

I look forward to reading your post in that group and learning more about your brother's diagnosis.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 28, 2023

I would like to extend an invitation to all members of the NET support group on Mayo Connect to a virtual meeting hosted by Mayo Clinic, Jacksonville, Florida. Here is the information for the meeting on Thursday, November 2, 2023, from 5:30 to 7:00 p.m. Eastern time. Guest speaker will be Dr. Jacob Core, Interventional Radiologist with 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. There is also time during the meeting to talk with others who have NETs and learn from their experiences.

Please click the link to register in advance for this meeting:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering, you will receive a confirmation email containing information about joining the meeting, including the Zoom link.

If you have any questions, contact, Loriell Grossling, LCSW
email: grossling.loriell@mayo.edu

I would especially like to invite some of the newer members of the NET group including: @racb @kwan @mamadneuroendocrine @shellster @kristys72 @familything @akpijazz @charlenesf @thalverson @mimmy @chanterelle @makebadaniels73 @willam @amk1122

REPLY
1 reply
meryls12 | @meryls12 | Oct 29, 2023
In reply to @hopeful33250 "I would like to extend an invitation to all members of the NET support group on..." + (show)
@hopeful33250

I would like to extend an invitation to all members of the NET support group on Mayo Connect to a virtual meeting hosted by Mayo Clinic, Jacksonville, Florida. Here is the information for the meeting on Thursday, November 2, 2023, from 5:30 to 7:00 p.m. Eastern time. Guest speaker will be Dr. Jacob Core, Interventional Radiologist with 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. There is also time during the meeting to talk with others who have NETs and learn from their experiences.

Please click the link to register in advance for this meeting:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering, you will receive a confirmation email containing information about joining the meeting, including the Zoom link.

If you have any questions, contact, Loriell Grossling, LCSW
email: grossling.loriell@mayo.edu

I would especially like to invite some of the newer members of the NET group including: @racb @kwan @mamadneuroendocrine @shellster @kristys72 @familything @akpijazz @charlenesf @thalverson @mimmy @chanterelle @makebadaniels73 @willam @amk1122

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does this meeting discuss Dipnech? thank you

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 29, 2023
In reply to @meryls12 "does this meeting discuss Dipnech? thank you" + (show)
@meryls12

does this meeting discuss Dipnech? thank you

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@meryls12

You can bring up the topic during the sharing time with the rest of the group. There may be another member there who has Dipnech. However, I'm not sure about that.

I think you will find the group interesting and helpful.

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