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.

ksnozal | @ksnozal | Jan 25, 2024

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

scs23 | @scs23 | Jan 20, 2024

In reply to @ksnozal "Hello. I was diagnosed October 2017. I’m very battle worn after 6.5 years of treatment. 2..." + (show)

Wow, you've been through a lot. I've also had two surgeries, first one took my upper left lobe of my lung. I had chemo and radiation at the same time this past summer. Scans from October looked good but scans from December showed 2 tumors in the plura of my lung, one 9x5 cm, the other 3x3 cm. Also a lump started growing on my side thats now 3x3 cm also. I spent half of December in the hospital for pain control, it feels like something is trying to burst out of my body. I just started a new regimen of chemo earlier this month. Hopefully these tumors start to shrink fast and give me some pain relief. What type of holistic therapies have you used to rebuild your immune system? I haven't heard of Rein in Sarcoma, but I'll check it out. Is it online too or just in person?

ksnozal | @ksnozal | Jan 20, 2024

Hello. I was diagnosed October 2017. I’m very battle worn after 6.5 years of treatment. 2 major surgeries, 4 ablations, 2 five day stretches of SBRT radiation and combining inpatient and outpatient chemo, I’ve had at least 65 chemo infusions. I’ve also done a lot of integrative and holistic therapies to rebuild my body and immune system. As you know any type of Sarcoma is rare, it’s tough because we have fewer drug therapy options. If you reside in MN, are you aware that there is a Sarcoma group called Rein in Sarcoma? Check it out, it’s a way to connect with other sarcoma survivors. How are you doing and are you currently doing any treatment ?

scs23 | @scs23 | Jan 20, 2024

Hello @ksnozal Sorry to hear about your diagnosis. How long ago did you find out? Have you gone through any treatments yet? I also have a rare and aggressive sarcoma, although its not the same type as yours. Mine is synovial spindle cell sarcoma. Its in my left lung, chest wall, and another tumor is in the soft tissue on my left side. I was diagnosed a year ago.