Everolimus/ Afinitor experience/side effects

I'm sorry you have to go through this.
My husband was on Everolimus for 3 years and everything was kept stable. He never got mouth sores. His biggest issue and one for your oncologist and primary doctor to closely monitor is your blood sugar. Both lanreotide and everolimus are known to increase it on their own so the 2 together can increase it even more. My husband became type 2 diabetic as a result. Many people taking both end up on metformin to control the blood sugar. His other nain problem was fatique. Most doctors will start you out at the recommended dosage of everolimus and then back you down if the side effects are too much. My husband started at 10 but ended up at 7.5. You can take it with or without food but consistency is important so take it at the same time of day each day with a full glass of water.
Has your doctor considered captem as an option? It is shown to be very effective on pnets, often resulting in shrinkage whereas everolimus typically results in stability, which is still a good thing.
Are you seeing a net specialist?

I was diagnosed Jan 2020, grade 3 (ki67 17-29%), well differentiated, unknown primary, mets to liver (innumerable), lungs, pancreas, bones, parotid gland and adrenal gland, inoperable. I’ve been on 10 different lines of treatment and have been on treatment constantly since diagnosis. I was on Afinitor from June 2024-February 2025, and to be very honest, it was the easiest treatment I’ve ever been on. Very few side effects, and I felt great. I was able to exercise, had very little fatigue. Maybe a little bit of bloating/gassiness with certain foods. I was actually sad when scans in February showed progression because I would have loved to stay on it. It was so easy for me. I started on 10mg, had to reduce to 7.5mg one month in due to low blood counts. Stayed on that dose for the remainder of treatment with blood counts staying normal. I did not have blood sugar issues. I took mine first thing in the morning. I would strongly suggest hiding it in a spoonful of pudding or yogurt—it greatly reduces the chance of mouth sores. I’ve also heard people buying vegetable capsules on Amazon to put the pill in. Either way, try to hide it and swallow whole with a full glass of water. I never had mouth sores. Happy to add any info that would be helpful—I keep a detailed daily journal of side effects and could answer additional questions you might have! Hugs to you and best wishes as you move forward!

Diagnosed in January 2021, unknown primary with mets to liver. Did lanreotide injections for about 4 years also did a 4 treatment PRRT starting in late 2021. PRRT was very effective for me and until June 2024 everything was quiet & stable. I now have 2 lesions that are looking 'viable' so that is when I started Everolimus to see if that would keep those stable--jury is still out on that. I too started with a 5mg dose, was increased to 10mg after 1 month and I did not tolerate that well and ended up in emergency room with pneumonitis (one of the listed side effects!). I've been on the 5 mg for over a year now, no problem. Morning seems best for me--I have several other drugs related to A Fib--so try to spread them out over the day. I always take it buried in yogurt or apple sauce after breakfast and follow with a full glass of water, but I did experience some mouth sores--definitely not fun! One of my oncologists suggested putting it inside a mini marshmallow! I've learned that the mouth-sores clear up for me with the mouthwash (dex) and if I am careful, I don't have to do that every day, just when they start to appear. I also switched to 'sensitive' toothpaste and swish my mouth with a baking soda solution. Very few sores these days. The dex mouthwash leaves a weird taste in your mouth, but it works when you need it. I do get a little fatigue once in a while, but it may be a combination of drugs and age (78) --a nap now and then helps. I would echo this is one of the easier drugs I've taken, no nausea or intestinal upset (I had lots of side effects with Lanreotide--but they all cleared up when I stopped the injections). Hope it works for you!!!

I started at 5mg, but after tumor progression raised to 7.5 which slowed the progression. I have had mouth sores since the beginning and tried everything jello, gel capsules, cream, rinsing with baking soda, but continue to get them. I do the mouthwash and that helps with the pain. I also have acne, fatigue, thinning finger nails, and worse diarrhea than before. However the worst side effects have been muscle, joint and tendon pain. My hips. Knees, ankles and Achilles tendons are always painful. Rest and hot baths help. I take Imodium 3 times daily which helps with the diarrhea. I typically have a difficult time with drug side effects and am seriously considering PRRT as my next treatment.

As to the mouthsores, my understanding is that they result as a systemic reaction to the drug. Not physical contact in the mouth.