Everolimus for Neuroendocrine Tumors User Reviews

• mim...
• Taken for 1 to 2 years
• March 22, 2018

Everolimus "I started taking Afinitor on May 20, 2016, and I've given the drug a 9 because I'm still very much alive, able to work (computer work), take a 25-minute walk every day, and receive visitors. I have had side effects, including diarrhea, neuropathy (feet and ankles), loss of energy, and mouth sores (very infrequent now). I take paracetamol (6 x 500 mg daily) for pain. My tumors (lung and liver) shrank a tiny bit and then remained the same. I have CT scans, X-rays, blood, and urine tests. My appetite is good. I do not live in the USA."

• Anonymous
• Taken for 6 months to 1 year
• January 20, 2018

Everolimus "I started this in April 2016. The side effects did not start until June. It started with diarrhea, then hemorrhoids, then itching, weight loss, and loss of appetite. I kept telling my doctor something was wrong, but he told me to eat anything I wanted. But the final situation was I got an infection in my right eye. I was in the hospital for 10 days. He only came once to tell me to stop taking the Afinitor. Upon release, I had to go to a doctor who specializes in infectious diseases for 2 months, and this was every day. Weight-wise, I went from 162 to 124. I am now just skin and bones. Also, the tumor just kept growing. I went to another cancer doctor, and he performed surgery to remove the tumor. This medication is the worst."

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

"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."

• BOB...
• Taken for 1 to 6 months
• February 1, 2023

"I was prescribed to take this medication and had terrible side effects. The initial side effects of nausea and diarrhea were manageable, however, the rest of the side effects were not. I had a bloody nose that continued after using a humidifier and mupirocin, then I developed a large rash on my abdomen and waist that was like a mild sunburn with peeling. I also had a weight loss of 8-10 pounds and a loss of muscle mass, which was not ideal as I am already underweight. Despite the side effects, the medication was helping ease the skin flushing associated with carcinoid. I will not be continuing this medication as the side effects were too extreme for me."