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GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors
Sarcoma | Last Active: Jan 20 7:21am | Replies (18)Comment receiving replies
Hello @colleenyoung
for sure I will share updates, as said at the moment my wife started (just few weeks ago) a therapy with Votrient, this will go on for some months and then there will be a valuation. The side effects are important, mild painkillers are necessary daily. No surgery has been made or programmed at the moment. Did anyone else experience treatment with Votrient?
Thanks for this space, the Mayo Clinic Connect, who gives the opportunity to connect with persons sharing such specific experiences, and, in particular, thank you Kris for creating this post, I hope we will get in touch. I think that contacting directly is important too, it can give people the opportunity to share information that they would prefer not to share publicly.
A last question, if I would decide to contact Mayo Clinic, who should I contact? Can you share the Doctor or the department of reference? Given the extreme rarity of the disease it would be very important to know the specific few Doctors with experience on this to contact (here at Mayo Clinic or in other hospitals).
Thank you
Replies to "Hello @colleenyoung for sure I will share updates, as said at the moment my wife started..."
@videvale, should you and your wife wish to come to Mayo Clinic, you can start the request as an international patient here: http://mayocl.in/1mtmR63
Here's additional information about International Patient Services
https://www.mayoclinic.org/departments-centers/international
There are NETs specialists at all 3 locations of Mayo Clinic. You might also be interested in joining the next Neuroendocrine Cancer support group facilitated by a Mayo Clinic social worker. The next meeting is Feb 6
The Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time.
Please click the link to register in advance for this meeting:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering, you will receive a confirmation email containing information about joining the meeting.
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Hello, everyone, you’re very welcome, I’m so glad creating the post generated interest.
Sorry for my delay but I was fighting for my life as my liver and kidneys are starting to fail. I was in the hospital for 2 weeks over the holidays. I am discharged now and receiving home nursing visits. I’m single and don’t have a caretaker so everything falls on me to coordinate.
I could list out all the procedures I’ve done which created all of my war wounds. Mostly to the liver. I learned early on that GNET often targets the liver.
I receive care at Mayo, fVWH Health in the twin cities and I consult with a few well established Integrative Cancer specialists. I have been fighting the disease for over 7 years
I look forward to hearing from others in the journey , Kris