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← Return to Everolimus for multiple Neuroendocrine tumors
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Everolimus for multiple Neuroendocrine tumors
Neuroendocrine Tumors (NETs) | Last Active: Aug 15 8:38am | Replies (26)Comment receiving replies
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.
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I got a second opinion from MD Anderson's Neuroendocrine research doctors who also recommended Everolimus. My oncologist planned to prescribe it with another med but MDA's research trials showed no significance in adding another med, just the Everolimus and continuing the injections. It seems you know the worst of the side effects of Everolimus, mouth sores. I was told to swallow it quickly, not to handle it more than necessary and to wash my hands afterwards, rinse my mouth and use the meds if sores occurred. Long story short, I never ended up taking it. Before I started it, the next set of scans showed the tumor that caused them to consider this med, was no longer active (it wasn't lighting up on the scans for cancer). This does not mean I will never take it. MD Anderson said I will eventually need all the treatments I asked her about within my lifetime. I am praying the bottle of Everolimus and its accoutrements expire before I need them. You mentioned stomach issues and weight loss. I have been taking CREON with every meal or snack. It works. It did take me a while to regulate it, but it really does help so give it time. If you do take it you may be eligible for copay assistance from the manufacturer. Look up Creon patient support and you will find it. This site will not allow me to share a link. Me in brief: Pancreas NET removed 2020. Secondary liver 2022 started Lanreotide injections, more spots found in 2023 lead me to 2nd opinion with MD Anderson in Houston, they are now part of my cancer team and receive all copies of my tests and bloodwork. I recommend getting as many second opinions as you can to feel good about the decision and stay diligent with your bloodwork and follow up scans. Keep the faith!