GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

@videvale Hello Vincenzo and welcome to Mayo Connect. As you have mentioned @ksnozal and @mijomi in your post, they will get notifications that you are interested in connecting with them about your wife's GNET.

How long ago was your wife diagnosed? Has a treatment plan been developed yet?

Hello Vincenzo,

This is Kris N. I’m so sorry to hear about your wife. I’d be happy to connect with you. As you know we have a very rare disease. How long has you wife been diagnosed? I just passed my 7 year anniversary. But I’ve been through A LOT of treatment and have many complications. Can I assume she is being treated at Mayo? Where are you from? I’m from the twin cities so luckily my drive is about 2 hours. I look forward to hearing back from you. God Bless, Kris

Hello Kris and Teresa,
thanks a lot for replying. She was diagnosed about 1 month ago. She started a treatment with Votrient (pazopanib) one week ago. I'm writing from Italy, so she is treated here, I'm searching everywhere to have/share some information given the extreme rarity of the desease.
How can we connect? Can I give my email address? I see the box of private messages also here but I could not find the way to write you directly.
Thank you very much

Hello Vincenzo,
I'd love to chat with you about our experience. I copy and pasted the directions below on how to send a private message to a user. I will send you one and hopefully you will receive it.
I know a few sentences cannot encapsulate all anyone endures whether it's the patient, family member or significant other. Please feel free to reach out anytime.
Love and light to you and yours,
Josey

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@videvale, I see that you would like to message members like @ksnozal and @mijomi privately. You will be able to do so in a few days.

However, I'd also like to point out the benefit of sharing here in the support group where you receive support and information from several people and learn from each other. And other people with a similar diagnosis will join in.

As you mentioned in an earlier post, you found Mayo Clinic Connect because people shared on the forum about living with a GNET-Gastrointestinal Neuroectodermal Tumor. I hope you will continue to share your experiences here.

How is your wife doing? What treatment plan has been recommended for her?

Hello @colleenyoung
for sure I will share updates, as said at the moment my wife started (just few weeks ago) a therapy with Votrient, this will go on for some months and then there will be a valuation. The side effects are important, mild painkillers are necessary daily. No surgery has been made or programmed at the moment. Did anyone else experience treatment with Votrient?

Thanks for this space, the Mayo Clinic Connect, who gives the opportunity to connect with persons sharing such specific experiences, and, in particular, thank you Kris for creating this post, I hope we will get in touch. I think that contacting directly is important too, it can give people the opportunity to share information that they would prefer not to share publicly.

A last question, if I would decide to contact Mayo Clinic, who should I contact? Can you share the Doctor or the department of reference? Given the extreme rarity of the disease it would be very important to know the specific few Doctors with experience on this to contact (here at Mayo Clinic or in other hospitals).

Thank you

Hello, everyone, you’re very welcome, I’m so glad creating the post generated interest.

Sorry for my delay but I was fighting for my life as my liver and kidneys are starting to fail. I was in the hospital for 2 weeks over the holidays. I am discharged now and receiving home nursing visits. I’m single and don’t have a caretaker so everything falls on me to coordinate.

I could list out all the procedures I’ve done which created all of my war wounds. Mostly to the liver. I learned early on that GNET often targets the liver.

I receive care at Mayo, fVWH Health in the twin cities and I consult with a few well established Integrative Cancer specialists. I have been fighting the disease for over 7 years

I look forward to hearing from others in the journey , Kris

@videvale, should you and your wife wish to come to Mayo Clinic, you can start the request as an international patient here: http://mayocl.in/1mtmR63

Here's additional information about International Patient Services
https://www.mayoclinic.org/departments-centers/international
There are NETs specialists at all 3 locations of Mayo Clinic. You might also be interested in joining the next Neuroendocrine Cancer support group facilitated by a Mayo Clinic social worker. The next meeting is Feb 6

The Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time.

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.