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Long Time Survivor With Concerns re Metastasis

Neuroendocrine Tumors (NETs) | Last Active: Oct 5, 2023 | Replies (38)
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@hopeful33250

Hello @davisnrn and welcome to Mayo Clinic Connect. It sounds as if you have had some effective treatment at Mayo Clinic. Mayo has some great NET specialists.

I am a 20-year survivor of NETs and I've had three surgeries of the upper digestive tract. No other treatment has been needed so far. You will find that each person's story of their NETs journey is quite different.

I am sorry to hear of your painful mouth sores. Does your medical team think that these will return when you begin the treatment again? I see that @bluedane has also taken Affintor (the brand name for Everolimus. I hope that he/she will join this discussion and share experiences with you.

I'm guessing that with these mouth sores, eating has been a problem. Have you lost a significant amount of weight?

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Replies to "Hello @davisnrn and welcome to Mayo Clinic Connect. It sounds as if you have had some..."
davisnrn | @davisnrn | Mar 17, 2023

thanks for your note. always good to hear of other NET folks with good outcomes. I lost 5 lbs in a week. not sure about the week off the drug. Not sure if same problem will recur when I go back on. If so, the possibility of reducing dosage, or doing every other day at same 10mg. will give it a real try but it’s hard to feel so much worse with treatment than without any treatment. will start back on 3/28 and will stay connected to Mayo Connect. thanks again.

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