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Welcome to the NETs Group! Come say hi.
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (410)Comment receiving replies
I'm glad that you provided some more information about your diagnosis.
I would also like to invite you to a virtual NETs support group at Mayo, that is facilitated by a Mayo social worker, Michelle Walsh, @michellewalsh from the Jacksonville, FL campus. The meeting is held via Zoom on the first Thursday of each month beginning at 5:30 p.m. EST and usually continuing until 7 p.m. or so. Every other month there is a medical specialist who speaks on some aspect of treatment for NETs and on the in-between months, there is general group sharing. As you are relatively new to this diagnosis you will probably find it helpful and educational to learn and share with others.
You mentioned a Dex mouthwash. I'm not familiar with that. Could you discuss how it helps?
Do you have an appointment yet for the next scan at Mayo? Do you visit Mayo in Rochester, Minnesota, or another campus?
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TY I go to mayo in Jax and have been to the support group via our other email address. Dex wash for persons on afinitor to prevent mouthsores a common complaint and some people have real problems with it and will stop taking afinitor in my case mouth sores were not an issue and I found Dr. Mary Hogan about d/c dex after 8 weeks if no sores dr starr agreed with this. so thought would spread the word one less med. My next scan is March 15. I also exercize meditate and changed my eating habits after my sister in law a dr of pharmacology sent me a book Eat to beat disease by Dr Li which is great. Also in counseling for recent loss of family as well. Also go to accupuncture have a great person very supportive. thank you Carol