← Return to Everolimus for multiple Neuroendocrine tumors

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@joneshome

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 Before I started it, the next set of scans showed the tumor that caused them to consider this med, was no longer active (it wasn't lighting up on the scans for cancer).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!

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Replies to "I got a second opinion from MD Anderson's Neuroendocrine research doctors who also recommended Everolimus. My..."

thanks for the suggestions. I checked the info on Creon and I am on Allopurinol for elevated uric acid which is a warning for Creon. My NET was small intestine no pancreas tumors-so I don’t know that I have a pancreas functioning issue—but will ask my Mayo doctor next month. You are absolutely right about second opinions. I am seen monthly by our local cancer center and every 6-12 months by Mayo Clinic. They work well collaboratively for my care. Good luck and good health. Hope you will not need that Everolimus.