1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
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?

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

Tom Wilson | @tomewilson | Sep 20, 2019
In reply to @amandafl "I guess I should introduce myself before I answer people. I am a NET patient at..." + (show)
@amandafl

I guess I should introduce myself before I answer people. I am a NET patient at Mayo. It was discovered November 2018. It was in my appendix, small intestines, colon, and lymph nodes. When I was diagnosed, the oncologist (not a NET doctor) at the hospital told me to, “Get my affairs in order.”. My family and I spend too much time thinking that my death was imminent. I learned from my NET doctor at Mayo that this wasn’t the case. I tried to find a support group but wasn’t able to.
I reached out to other patients because I wanted to learn from them and started a group online.
I decided to pitch an idea of a support and learning group for Neuroendocrine Cancer to Mayo hospital. Some of the other patients and I spoke to Mayo about what we wanted. We wanted it for patients and caregivers. (It’s hard for caregivers too!) We also wanted anyone to be able to join. (We have a call in number.)
I could not have done this without the support and help from these other patients. These people have become my friends and I have learned so much from them.

The support group now meets on the first Thursday of the month at 5:30pm EST and has around 30 people who attend. A social worker from Mayo moderates the group and the NET doctor has been in all of the meetings so far.

If you are a part of the group, then feel free to add anything I forgot. 🙂

Jump to this post

Amanda, good for you for starting the support group in Florida. I will plan to attend via conference call. Who is the NET doctor down there (I'm in Wisconsin). I run a support group throughout the State of Wisconsin. Attached is our flyer.

Shared files

Neuro-endocrine-cancer-flyer-2 (Neuro-endocrine-cancer-flyer-2.pdf)

REPLY
amandafl | @amandafl | Sep 19, 2019
In reply to @colleenyoung "Welcome to the NETs group on Mayo Clinic Connect, @amandafl. This is so exciting to have..." + (show)
@colleenyoung

Welcome to the NETs group on Mayo Clinic Connect, @amandafl. This is so exciting to have the online support group here mix with the in-person support group members from Mayo Clinic in Jacksonville, Florida.

NETs support group in JAX meets monthly to discuss a variety of topics such as symptom and disease management as well as the emotional, physical, and financial impact of the disease, featuring invited guests. People who are not able to attend in person can join by phone, using this number. Call 866-365-4406 (International +1 303 248 9655), access code 9537292#.

For anyone wishing to suggest a topic, post your ideas to the discussion Amanda started here:
- What topics do you want for the Neuroendocrine Support Group? https://connect.mayoclinic.org/discussion/what-topics-do-you-want-for-the-neuroendocrine-support-group/

Amanda, I'd like you to also meet @hopeful33250 @ahtaylor @joannem and @tomewilson to name a few members who have been living with NETs or caring with someone with NETs. Amanda, what treatments have you had? How are you doing today?

Jump to this post

@hopeful33250 @ahtaylor @joannem @tomewilson It’s nice to meet everyone. I will be happy to connect with anyone or answer any questions you have about the support group or anything else.
I am on a number of things including Lanreotide, Octreotide, blood pressure medications, Creon, Bentyl, and Xermelo to name a few. I have terrible syndrome that includes flushing, high or low blood pressure, Tachycardia, and the typical bathroom issues. I am more under control after learning from the other patients what works for them and what doesn’t.
Today has been an ok day. Switching my Lanreotide from every 4 weeks to every 3 weeks has helped a lot.

REPLY
1 reply
amandafl | @amandafl | Sep 19, 2019
In reply to @andre1221 "My name is André. My caretaker and best friend, Stephanie (wifey) live near the Sanford/Orlando Airport...." + (show)
@andre1221

My name is André. My caretaker and best friend, Stephanie (wifey) live near the Sanford/Orlando Airport.

I started getting sick approximately fourteen years ago. Roughly seven years ago, my illness went into overdrive. I have countless ambulance trips with hospital stays. My attacks began by presenting as anaphylactic shock. A local allergist treated me for two years and ultimately sent me to Mayo Clinic. My first appointment was October 16, 2017. It was the best thing that ever happened to me with this journey. On December 21, 2017, I was officially diagnosed with NETs and Carcinoid Syndrome.

The biggest battle that I have is there are no physical indications of tumors. My diagnosis came from signs and symptoms, positive bio-markers and positive response to SSA’s.

On August 01, 2018, my second opinion with another Florida NET Specialist theorized when my appendix ruptured in the 1990’s, it scattered cells throughout my system.

I am so blessed and beyond thankful for the Mayo Staff and fellow patients, who continue to support me throughout this battle.

I am currently on Lanreotide, Creon, Xermelo, Enterade and several other medications to give me some quality of life.

One day, Steph and I want to work for Mayo Clinic so we can help other patients feel the same warmth and love that was given to us.

Always glad to help. Please feel free to reach out.

Jump to this post

Hello Andre! Andre and his wife Stephanie have been founding members of the group and it couldn’t have happened without them!) I want to say thank you to both of you for everything you do! You both are amazing people and we all appreciate you!

REPLY
andre1221 | @andre1221 | Sep 19, 2019

My name is André. My caretaker and best friend, Stephanie (wifey) live near the Sanford/Orlando Airport.

I started getting sick approximately fourteen years ago. Roughly seven years ago, my illness went into overdrive. I have countless ambulance trips with hospital stays. My attacks began by presenting as anaphylactic shock. A local allergist treated me for two years and ultimately sent me to Mayo Clinic. My first appointment was October 16, 2017. It was the best thing that ever happened to me with this journey. On December 21, 2017, I was officially diagnosed with NETs and Carcinoid Syndrome.

The biggest battle that I have is there are no physical indications of tumors. My diagnosis came from signs and symptoms, positive bio-markers and positive response to SSA’s.

On August 01, 2018, my second opinion with another Florida NET Specialist theorized when my appendix ruptured in the 1990’s, it scattered cells throughout my system.

I am so blessed and beyond thankful for the Mayo Staff and fellow patients, who continue to support me throughout this battle.

I am currently on Lanreotide, Creon, Xermelo, Enterade and several other medications to give me some quality of life.

One day, Steph and I want to work for Mayo Clinic so we can help other patients feel the same warmth and love that was given to us.

Always glad to help. Please feel free to reach out.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 19, 2019
In reply to @amandafl "I guess I should introduce myself before I answer people. I am a NET patient at..." + (show)
@amandafl

I guess I should introduce myself before I answer people. I am a NET patient at Mayo. It was discovered November 2018. It was in my appendix, small intestines, colon, and lymph nodes. When I was diagnosed, the oncologist (not a NET doctor) at the hospital told me to, “Get my affairs in order.”. My family and I spend too much time thinking that my death was imminent. I learned from my NET doctor at Mayo that this wasn’t the case. I tried to find a support group but wasn’t able to.
I reached out to other patients because I wanted to learn from them and started a group online.
I decided to pitch an idea of a support and learning group for Neuroendocrine Cancer to Mayo hospital. Some of the other patients and I spoke to Mayo about what we wanted. We wanted it for patients and caregivers. (It’s hard for caregivers too!) We also wanted anyone to be able to join. (We have a call in number.)
I could not have done this without the support and help from these other patients. These people have become my friends and I have learned so much from them.

The support group now meets on the first Thursday of the month at 5:30pm EST and has around 30 people who attend. A social worker from Mayo moderates the group and the NET doctor has been in all of the meetings so far.

If you are a part of the group, then feel free to add anything I forgot. 🙂

Jump to this post

Welcome to the NETs group on Mayo Clinic Connect, @amandafl. This is so exciting to have the online support group here mix with the in-person support group members from Mayo Clinic in Jacksonville, Florida.

NETs support group in JAX meets monthly to discuss a variety of topics such as symptom and disease management as well as the emotional, physical, and financial impact of the disease, featuring invited guests. People who are not able to attend in person can join by phone, using this number. Call 866-365-4406 (International +1 303 248 9655), access code 9537292#.

For anyone wishing to suggest a topic, post your ideas to the discussion Amanda started here:
- What topics do you want for the Neuroendocrine Support Group? https://connect.mayoclinic.org/discussion/what-topics-do-you-want-for-the-neuroendocrine-support-group/

Amanda, I'd like you to also meet @hopeful33250 @ahtaylor @joannem and @tomewilson to name a few members who have been living with NETs or caring with someone with NETs. Amanda, what treatments have you had? How are you doing today?

REPLY
1 reply
amandafl | @amandafl | Sep 19, 2019

I guess I should introduce myself before I answer people. I am a NET patient at Mayo. It was discovered November 2018. It was in my appendix, small intestines, colon, and lymph nodes. When I was diagnosed, the oncologist (not a NET doctor) at the hospital told me to, “Get my affairs in order.”. My family and I spend too much time thinking that my death was imminent. I learned from my NET doctor at Mayo that this wasn’t the case. I tried to find a support group but wasn’t able to.
I reached out to other patients because I wanted to learn from them and started a group online.
I decided to pitch an idea of a support and learning group for Neuroendocrine Cancer to Mayo hospital. Some of the other patients and I spoke to Mayo about what we wanted. We wanted it for patients and caregivers. (It’s hard for caregivers too!) We also wanted anyone to be able to join. (We have a call in number.)
I could not have done this without the support and help from these other patients. These people have become my friends and I have learned so much from them.

The support group now meets on the first Thursday of the month at 5:30pm EST and has around 30 people who attend. A social worker from Mayo moderates the group and the NET doctor has been in all of the meetings so far.

If you are a part of the group, then feel free to add anything I forgot. 🙂

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 9, 2019

I'm excited to welcome several new members to the NETs group here on Mayo Clinic Connect who come to us via the NETs Support Group hosted by Mayo Clinic Florida.

Welcome @amandafl @sbcook70 @terryabk and @andre1221. This is our introduction thread. You can read through the past posts to get to know a bit more about your virtual fellow zebras. But let's start with you. Pull up a chair and tell us a bit about yourself. What's your NETs experience? How are you doing today?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 15, 2019

Hello All:

I think you might find this story of a NET patient (and this video) inspirational:

"I make different decisions now,” says Giovanna, 13 years after being diagnosed with neuroendocrine cancer. Her world crumbled after her diagnosis until she realized how she could use her music to heal -- both herself and others.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 28, 2019

Today is rare disease day! Don't forget to visit NCANs website to watch videos of presentations from top specialist in the field of Neuroendocrine cancer!
#NCAN
#netcancerawareness
#showyourstripes
#carcinoidsyndrome
#carcinoidcancer
#originalzebras
#awareness
#endnetcancer
#bringinglighttonets
#neuroendocrinecancerawarenessnetwork
#awarenesssaveslives

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