Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @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?

@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

Jump to this post

Does anyone have information on whether an MRI or CT scan is best when they are tracking your tumors?

REPLY

@gaylejean That is a good question. I have always thought that the Octreoscan was the best way to track NETs, but I know that other scans have been used as well. Let’s see what the other members of our community have to say about that.

@amyh2439 @tresjur @joannem @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 Please share with us, what types of scans have been used in your situation to track tumors. Teresa

REPLY

Hi everyone,
We recently launched a new feature on Connect called Member Spotlights (https://connect.mayoclinic.org/newsfeed-post/connect-member-spotlights-shining-a-light-on-community-members/).

I think the members of the NETs group will be particularly interested to read today's member spotlight about Teresa, someone each of you have CONNECTed with.

– Meet @hopeful33250: Striving so No One Feels Alone with Personal Health Challenges https://connect.mayoclinic.org/newsfeed-post/meet-hopeful33250-striving-so-no-one-ever-feels-alone-in-their-personal-health-challenges/

REPLY

Hello All

I just wanted to be sure that everyone is aware of the 2018 National Neuroendocrine Cancer Patient Conference, September 27 – 29 in Las Vegas
For more information or to registery, here is the link, http://events.r20.constantcontact.com/register/event?oeidk=a07ef2ple0oe27a1aa0&llr=hbloa4dab

Teresa

REPLY
@hopeful33250

Hello All

I just wanted to be sure that everyone is aware of the 2018 National Neuroendocrine Cancer Patient Conference, September 27 – 29 in Las Vegas
For more information or to registery, here is the link, http://events.r20.constantcontact.com/register/event?oeidk=a07ef2ple0oe27a1aa0&llr=hbloa4dab

Teresa

Jump to this post

Teresa… yes. I’ve been promoting it on our Wisconsin. NETs site.

REPLY

Here is a Youtube video titled the ABCs of Neuroendocrine Tumors and Carcinoids.
https://www.youtube.com/user/CarcinoidNETs

REPLY

Many of you have gotten to know @hopeful33250 in the discussions in the Neuroendocrine Tumor (NETs) group. Today @hopeful33250 is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post. The post includes video of @hopeful33250 talking about how she found Connect after her third neuroendocrine tumor diagnosis and experienced camaraderie there. She also shares how participating on Connect offered her a way to help other people through encouragement and pointing to resources. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

REPLY
@lisalucier

Many of you have gotten to know @hopeful33250 in the discussions in the Neuroendocrine Tumor (NETs) group. Today @hopeful33250 is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post. The post includes video of @hopeful33250 talking about how she found Connect after her third neuroendocrine tumor diagnosis and experienced camaraderie there. She also shares how participating on Connect offered her a way to help other people through encouragement and pointing to resources. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

Jump to this post

Very nice and thanks for all the mentor help!

REPLY

Hello All:

Here is a video with Mayo Dr. Thor speaking about NETs.

https://mail.google.com/mail/u/0/#inbox/FMfcgxwBVqMhZHqwvsllZJLfXTQvnjvg?projector=1

REPLY

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

REPLY

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.

Liked by tomewilson

REPLY

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

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
@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
@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

Jump to this post

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.

19AABB97-1D39-46B8-A169-3C929F9D0088

REPLY
Please login or register to post a reply.