Everolimus and Diarrhea: What Users Say

• Lif...
• Taken for 1 to 6 months
• March 15, 2016

Everolimus for Breast Cancer "Although the medication did effectively treat my cancer, the side effects were so severe that I decided to discontinue use of the drug and try an alternate treatment. Skin rash started on my hands initially and spread to my entire body, causing severe itching and scratching, which led to something looking like opened bug bites all over. Severe gum irritation, described by my dental hygienist as your gums are flapping in the wind, also red swollen gums, which caused me to be unable to eat anything not soft. Lost 10 lbs the first two months. Also, projectile vomiting, diarrhea, and nausea. At three months, I found it had made me diabetic and raised my triglycerides to over 500. That's when I opted to stop treatment."

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

Everolimus for Neuroendocrine Tumors "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 for Neuroendocrine Tumors "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

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."

• 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."

• 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."

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

For Neuroendocrine Tumors "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."

• 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?"