Everolimus User Reviews & Ratings

• mrd...
• Taken for 2 to 5 years
• July 23, 2013

Everolimus for Pancreatic Cancer "I have neuroendocrine tumors with metastasis to the liver. I was put on Afinitor (10 mg) since February 2011 after I had so many side effects from Sutent. Afinitor has made my liver mets stable or shrink somewhat, and I have no or minimal side effects. It was provided free of cost by Novartis. So thank you, Novartis."

• Kat...
• Taken for 1 to 6 months
• May 25, 2013

Everolimus for Breast Cancer "I was one of the few people who could not take it. It attacked my body along with the cancer. Quit taking it after 2 months, but it would not flush from my system. My skin was bad from dehydration, as it did not allow my body to absorb moisture in my arms and legs. My skin looked like parchment with nothing under it but bone and a little flesh. Lost over 20 pounds in about a month. Finally, my regular doctor put me in the hospital - as I found some men in Australia had to do. I was given I.V.s for 5 days and am feeling much better. It is a good medicine, but some people just cannot take it."

• its...
• Taken for 1 to 6 months
• June 9, 2014

Everolimus for Breast Cancer "I've been taking it for 5 months. After 6 weeks on 10 mg, my lymphedema arm got infected and really swollen. I was told it was shingles and Lyme disease. After 2 rounds of antibiotics, I went back on 5 mg. My subsequent scans show liver mets decreasing. My insurance cap was exceeded after 1 month ($$$), but I qualified for a Novartis program for free medicines-check it out. Side effects on 10 mg were intense-like chemo. 5 mg is much more tolerable, still, I must take Protonix every day for gastric upset. And I get really itchy."

• wrd...
• Taken for 6 months to 1 year
• August 31, 2015

Everolimus for Breast Cancer "Stage 4 with lymph and bone metastasis. Never on infusion chemo due to my autonomic diabetic nerve damage. Hormone treatments failed. Tamoxifen gave me terrible forgetfulness. Took Xeloda. At 6 months, scan showed cancer gone, except in a giant ulcer on the chest. Then Xeloda failed and cancer spread rapidly. Afinitor worked quickly with visible changes in two weeks. Four weeks, ulcer showing definitely better. Been about 5 months. Cat scan showed no cancer active. Ulcer a third smaller and still healing. Cancer itching totally relieved, although some itching as larger tumors heal. Had some slight nose bleeding issues early on, but with summer humidity, no problem. Chronic slight cough and congestion. Short of breath but can walk."

• 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."

• Dai...
• Taken for 1 to 6 months
• October 10, 2018

Everolimus for Breast Cancer "It was the worst experience ever with this medicine. I DO NOT RECOMMEND it at all. Please don’t take it. This is a TOXIC medicine. My mum used it, it caused her lung problems, lung embolism, lung inflammation, and MALIGNANT LYMPHOMA, and she died after using this TOXIC medicine. She used the 10 mg from March to May, then 5 mg from May to June, and she stopped it after suffering from allergies. She lost over 27 kilograms in a short period."

• WLJ...
• Taken for 5 to 10 years
• November 28, 2019

Everolimus for Organ Transplant, Rejection Prophylaxis "This is an exceptionally good drug for liver transplants. In fact, it is a monotherapy for me. One of the big selling points is that it does not create problems with kidneys, heart, lungs, etc. as other drugs can and do down the road. I started with 6 mg/day - went through an acute rejection at 6 weeks post-transplant (jumped up to 8 mg/day and steroids) and weaned back down to a monotherapy and 6 mg in the first two years. After it was discovered that this drug had no impact on my neuroendocrine tumor progression, I quit the study and found a physician who would work with me to lower this drug. I am currently on 2 mg (subclinical dose) and doing fine, 8 years post-transplant. I recommend this drug and say just be patient if you are a new transplant person. After about 1.5 years, push to get off all other drugs except this one, you will have fewer problems in the long run."

• 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."

• Dsi...
• Taken for 1 to 2 years
• January 8, 2018

Everolimus for Renal Angiomyolipoma "I had my left kidney removed in June 2016 and part of my left lung as it had metastasized. I was on Sutent and very ill, and on another drug that did not work. So far, this is helping to shrink my tumors in my lungs. The only side effect is a slight cough and some fatigue. Our family almost cannot afford my drugs, so I have to change to the cheap generic drugs."

• 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."

• Hop...
• Taken for 6 months to 1 year
• January 16, 2017

Everolimus for Brain Tumor "My daughter has been taking Afinitor 5 mg for a brain tumor, cerebellar pilocytic astrocytoma grade 1. The tumor, after an MRI every 3 months, is stable, no growth. After 2 surgeries, this pill is helping to keep all under control. Thanks, God!"

• 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."

• 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?"

• 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."

• Fig...
• Taken for 1 to 6 months
• September 23, 2017

For Breast Cancer "Sorry, but after 69 days, had to stop. Based on genomic testing, this drug was used to treat platinum-based resistant ovarian cancer with pleural effusion. I suffered insomnia, indigestion, lack of energy, and dry skin. My pleural effusion did not improve, and this drug made it worse. My CA-125 tripled under this drug. It just did not work for me despite genomic testing. Glad to hear it helped others, though."

• Hen...
• Taken for 1 to 6 months
• June 18, 2019

Everolimus "My mother took Afinitor with Letrozole for uterine cancer and said afterward that she felt like her bones were too weak to hold her up. Her bone density scans proved that to be true. For an older person, I think a baseline bone density test prior to beginning treatment would be helpful to know for sure if any changes in bone density are attributed to this drug."

• 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."

• rcb...
• January 30, 2011

Everolimus for Renal Cell Carcinoma "Worked but had to stop because my kidney creatinine level was too high."

• lov...
• June 8, 2013

Everolimus for Breast Cancer "Don't have any side effects, only mild tiredness. Been taking it for three weeks."

• Sue...
• January 10, 2013

Everolimus for Breast Cancer "Within 7 days of taking Afinitor, the fluid in my lung decreased."

• Anonymous
• Taken for 1 to 6 months
• June 27, 2012

Everolimus for Brain Tumor "I have been taking this medicine for 5 months, and my MRI showed that the SEGAs that I have in my brain were smaller than 6 months previous."

• cec...
• June 11, 2015

Everolimus for Breast Cancer "On this drug for 2 weeks, had severe side effects, swelling of both hands, rash, and small bubbles started appearing (pop it like water). Now it's on both feet, armpit. I had to stop taking it."