← Return to Everolimus for multiple Neuroendocrine tumors

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@dbamos1945

I am following this discussion with interest of PRRT (I get 2nd Lutathera 8/8/24) with Lanreotide shots. Everolimus was the other treatment option but choose PRRT. I have not tried this personally, but an amino acid pill suppliment “L-Lysine 1000mg” was recommended to take following your “E” pill (dosage up to 5000 mg) to combat the mouth sores. We are all zebras so check to verify if this supplement will help you.
I will be following along and hope to hear L-Lysene has elevated the mouth sore side effect.
Best results for you!

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Replies to "I am following this discussion with interest of PRRT (I get 2nd Lutathera 8/8/24) with Lanreotide..."

I started on Eberolimus 10mg daily March 2023. I developed mouth sores which bece more manageable with Dexamethasone liquid “swish and spit”. Over the 10 months I took 10mg, diarrhea was a constant, I developed hypertension, high cholesterol, and Type II diabetes, lost 50 pounds and by January 2024, I felt awful. There was a reluctance by my local oncologist to lower or stop the dosage as a CT seemed to indicate a new liver mass present. After consulting with my Mayo oncologist at Rochester, including an overread of the CT scan, He determined I had a “culmination of toxicities”, and I went off Everolimus for 2 weeks, then restarted at 5Mg dose on 2/15/24. Since then I have regained 16 pounds, feel better overall with better energy levels and my diabetes and high cholesterol have disappeared thankfully. I will return to Mayo mid September for scans and follow up to make sure the lower dose is effective. Diarrhea remains and I continue on Lanreotide injections every 28 days which I have been on since November 2018. Crossing my fingers for OK reports at my September appointments.