← Return to GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

Discussion

GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

Sarcoma | Last Active: Jan 20 7:21am | Replies (18)
Comment receiving replies
@videvale

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

Jump to this post

Replies to "Hello Kris and Teresa, thanks a lot for replying. She was diagnosed about 1 month ago...."
Colleen Young, Connect Director | @colleenyoung | Jan 16 1:31pm

@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?

VIEW AND REPLY