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Long Time Survivor With Concerns re Metastasis
Neuroendocrine Tumors (NETs) | Last Active: Oct 5, 2023 | Replies (38)Comment receiving replies
So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis in 2014 with likely no future progression. However in 2018, discovered many liver mets which caused paraneoplastic autoimmune syndrome blasting clumps of antibodies onto my spinal cord causing neurological problems. after about 1 year of treatment including ablation of half the liver tumors I have been reasonably healthy and happy all thanks to my care at Mayo in Rochester. I have been on Lanretide injections every 28 days since 2018. now liver tumors are increasing and doctors have recommended Everolimus oral therapy or PRRT. I chose the oral Everolimus and took it for 12 days with fatigue, joint pains, and 7 painful mouth sores. I am off the drug for one week now to heal the sores. Wonder if these side effects will come back when I resume the Everolimus. Anyone have experience with this drug and any suggestions. thanks in advance.
Replies to "So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis..."
Hello,
I was taking Everolimus 10mg for about 1 month then stopped when I became elegible for PRRT
treatment. I also got mouth sores about 3 weeks into it, I guess its a common side effect. My Dr
said he could give me something for the mouth sores. (very uncomfortable). I may have to go back on Everolimus if PRRT doesn't work. I have several metastatic carcinoid tumers plus liver stuff. I am still having classic carcinoid symptoms although they seemed to have decreased
somewhat.
Thanks
John
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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?