Afinitor and Itching: What Users Say

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

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

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

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."

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

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."