Everolimus and Mouth Sores: What Users Say

• Dak...
• Taken for 1 to 2 years
• April 12, 2019

For Neuroendocrine Tumors "Started taking everolimus orally, 10 mg daily, December 5, 2017, for pancreatic neuroendocrine tumor metastatic to the liver in combination with a once every four-week injection (30 mg) of Octreotide LAR. Tumors actually shrunk some during the first year; since, they have remained stable to April 2019. Do have occasional side effects - mouth sores, some weakness and fatigue, loose stool to occasional diarrhea. For the most part, I function very normally. Good appetite. My weight is reasonably stable, and I do well in spite of a stage IV cancer diagnosis. For 'PNET', pancreatic neuroendocrine tumors, this drug appears to be very effective - at least for me."

• Fig...
• Taken for less than 1 month
• December 19, 2020

Everolimus for Breast Cancer "I have been taking Afinitor for about 2 weeks. Just feel I cannot continue with it, feeling like my heart is racing for hours after taking it, it feels close to a panic feeling. No mouth sores (yet), doing the steroid mouth swish as ordered. However, I suddenly have a cluster of large pimple-like sores on my inner thighs, my skin in general feels very dry. I just cannot deal with sores and am terrified they will become widespread. I was on Ibrance for a year, and then it stopped working. The only side effect was fatigue, that I can deal with, but sores - no. Calling my doctor and telling him the side effects are too much! Give me a med that has fewer serious side effects! I have not taken it long enough to evaluate if it is even being effective. Just know the side effects have begun right away."

• Vic...
• Taken for 6 months to 1 year
• December 20, 2019

Everolimus for Renal Cell Carcinoma "Everolimus was part of my first-line treatment. I had to dose-reduce twice. I was very fatigued, and the nausea and diarrhea put me in the ER four times. I did have a partial response, but I had a very poor quality of life. I was dependent on an electric wheelchair and was unable to do daily tasks. My hair thinned, I lost a lot of weight. My appetite was non-existent, and I got mouth sores. But it did work for a while, so I would do it again."

• MCH...
• Taken for 1 to 6 months
• December 15, 2022

Everolimus for Breast Cancer "My sister has breast cancer metastasized to the liver. She took Afinitor for seven weeks. Mouth sores, rapid heart rate, fatigue, and diarrhea, and the cancer increased in size. Now she will be put on chemo. She is not living in the U.S. Any helpful advice you can share, please?"

• Lau...
• Taken for 1 to 6 months
• May 9, 2022

For Organ Transplant, Rejection Prophylaxis "I was prescribed 3 mg/day, but after 10 days, I was in such a down with the immunity, my mouth full of sores and my joints in pain, also an acute depression state and hair falling, that I had to go down to 1 mg. The same symptoms continued, especially extreme fatigue and sleepiness, so now I take just 0.5 every 3 days. I feel much better, and it works for my condition. I feel that I could take it even once a week. We'll see. Good luck to everybody."

• Jul...
• Taken for 6 months to 1 year
• April 1, 2022

"I suffer from chronic allergies to almost everything since I was 32, 8 years ago, a horrible disease that I developed after being pregnant. Mast cell activation disorder (MCAD) is the name of the condition. For the treatment, a mix of desloratadine, bupropion, and curcumin to be stable. But now I also try this Everolimus; in the first 2.5 months at 1 mg/day, I had low immunity, mouth sores, and a flare of candida, also some acne and itches, a bit of hair fall and munchies, but I reduced the dose to 1 mg/2 days and got better, almost no sign of allergic reaction, full energy, normal life. So the reactions are very dependent on the dose and length of the use period. Of course, at high doses, the reactions could be violent. I believe that if it is not an urgency, the initial dose should be pretty low, like 1 mg/day and increased with time if needed. Good luck to everyone."