GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

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,

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 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 everyone,
unfortunately recently my wife has been diagnosed with a GNET-Gastrointestinal Neuroectodermal Tumor. I reached this page searching for disease experience, I would love to share information and experience.
I'm sorry to read all the stories in the comments, hope everyone is safe and well.
I don't know if it is possible to contact @ksnozal and @mijomi directly somehow, it would be very helpful to understand what therapy was made and every other helpful information.
Thank you in advance for your time.
Vincenzo

@mijomi, welcome. I'm tagging @ksnozal to make sure that they see your post about your daughter. Your message brings hope. May I ask what treatment your daughter had? How is she doing?

My daughter was diagnosed with GNET 4 years ago. She is a survivor and shows no sign of disease right now. How are you?

I am so sorry for the uncertainty that you face. You are very strong and have a positive outlook that will enable you to do what you must.

I too have a rare cancer. A senoval sarcoma in the gastrointestinal tract. I was operated on and it was removed. However, because of the size of the growth it will return. I am always waiting in fear. I have CAT scan every 6 months and see oncologist every 6 months. No, after removal, treatment required. I wonder if anyone out there has experienced this type of cancer. It affects one to three people in a million. Please inform. Thank you!

Hello, I’m sorry to hear about your rare diagnosis as well. Having cancer is hard enough, and then having a super rare one with little data or treatment protocols is terrifying. I’ve done everything there is, chemo, SBRT radiation, surgeries, lots of integrative therapies. I’ve survived the original prognosis of “less than a year”, I’m at 6.5 years, but my body is beat up and quality of life has diminished. I’m tired. I just had another ablation to 3 tumors this week, it’s like playing Whack a Mole, tumors pop up and I go through painful treatment to annihilate them and the darn disease makes more. And unfortunately so many of the causes are outside of our control. Our homes, infrastructure, food, water, body products etc are loaded with chemicals, we’re surrounded by harmful frequencies like EMF’s, and it’s only going to get worst. We have to be our own advocate and seek out as clean of a lifestyle as we can. Good luck to everyone out there

Hello.
I have been searching for the word “neuroectodermal” for more than a year on Connect…
This is the first time I see a search result 😅
I dont know if it is good or bad.

I was diagnosed with a Central Nervous System Neuroectodermal tumor (neuroblastoma features) in the uterus, in Sept 2022.
Went through a full hysterectomy and 6 months of extensive chemo.
No radiations.
I will have my second “post-treatment” check-up early March and crossing my fingers.
Compared to you, i have had it quite easy so far, physically. Except for 2 ER trips with transfusions for “really low” blood count and now, having peripheral neuropathy, I have not experienced major pain.
My journey is still at its beginning, considering the odds or recurrence but I take it 1 day at a time. This is the only way.

Hoping to connect with you more 🙂

Hello,
Yes, Rein in Sarcoma does have some virtual offerings as well. Definitely check it out, it’s nice to have a sarcoma support organization in the Midwest. There’s an event coming up on Feb 4th , called The Winter Gathering. If you live in MN(?) , maybe consider attending.

I take lots of good quality supplements to support the immune system. And I previously did high does vitamin infusions and various body therapies to help heal after all of my procedures.

I hope you get some pain relief soon. Good luck with chemo and I pray it shrinks your disease !
Kris