GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

Posted by ksnozal @ksnozal, Jan 19, 2024

Hello fellow Mayo patients,
I am looking for other patients with the diagnosis of a very rare and aggressive Sarcoma called: GNET-Gastrointestinal Neuroectodermal Tumors. I'd like to connect with other patients with the disease to be a support to one another and share helpful information. Is anyone out there with this disease or know of someone who has it? I look forward to connecting. Thanks, Kris

Interested in more discussions like this? Go to the Sarcoma Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago

In reply to @videvale "Hello everyone, unfortunately recently my wife has been diagnosed with a GNET-Gastrointestinal Neuroectodermal Tumor. I reached..." + (show)

@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?

ksnozal | @ksnozal | 20 hours ago

In reply to @videvale "Hello everyone, unfortunately recently my wife has been diagnosed with a GNET-Gastrointestinal Neuroectodermal Tumor. I reached..." + (show)

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

videvale | @videvale | 12 hours ago

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

mijomi | @mijomi | 6 hours ago

In reply to @videvale "Hello everyone, unfortunately recently my wife has been diagnosed with a GNET-Gastrointestinal Neuroectodermal Tumor. I reached..." + (show)

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 | @videvale | 4 hours ago

Hello Josey,
thanks a lot for the indications. I think I'm in the "brief period where new members can't send private messages", so at the moment I cannot write private messages and even not reply to the ones received (that's why I didn't reply to your message here on Mayo, but I sent you an email).
But I can receive private messages, so please @ksnozal and anyone else who wants to contact me, please send me a message with your email address, I will write from my email asap.
Hope to hear from you soon.
Thank you very much @mijomi