GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

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.

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 ?

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?

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

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, 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

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!

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

@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?