Nivolumab and Pain: What Users Say

• Lar...
• Taken for 1 to 6 months
• September 15, 2015

Nivolumab for Non Small Cell Lung Cancer "I started on Opdivo 6 weeks ago because my chemo and radiation did not keep the cancer at bay. I decided to try it to build up my immune system. The first time I had it, as I was at the end of the IV, I started feeling cold and my blood pressure shot up. The nurses gave me shots to bring it down. The second time I had it, every other week, they gave me some steroids first so I wouldn't have a reaction, and I didn't. I did have some achy bones and breakthrough pain. The third time I had it, and last time, it went fine until I started having 103-degree fevers and my entire body broke out in a red itchy rash. I am on Prednisone IVs, and I'm weaning off it right now, but the rash is so itchy, and nothing takes it away! Too many reactions..."

• Amo...
• October 17, 2018

Nivolumab for Melanoma "My sister (age 35) was diagnosed with melanoma in April 2018. The cancer had spread to her lymph nodes but was confirmed to have not spread to any organs. In May 2018, after the removal of 40 lymph nodes, she had “no detectable melanomas.” She immediately began her infusions. Pain started within the first 2 treatments but was determined to be a side effect of this treatment. Then in early September, she was in such pain she went to the emergency room. It was shortly confirmed that she had large tumors pretty much everywhere except her brain. Within 3 weeks, she died. This treatment in no way worked, indeed, her oncologist believes it actually accelerated her melanoma. Please consider not using this treatment, it is like playing a game of roulette! For those that it doesn't work on, it REALLY doesn't work. She would have lived much longer by just dealing with the tumors as they arose and without the last 3 months of her life filled with terrible pain."

• Anonymous
• Taken for less than 1 month
• January 6, 2017

Nivolumab for Non Small Cell Lung Cancer "My husband had 2 treatments. By the 3rd scheduled appointment, he had died. My husband's primary cancer was renal carcinoma, which spread to the lung after 3 years. He started having a stiff neck with a lot of pain, very low blood pressure, and later developed an intracranial bleed. That was it, over. I really believe the drug may have caused more problems than good. Like the previous reviewer said, do your homework."

• jkr...
• Taken for less than 1 month
• July 9, 2022

For Melanoma, Metastatic "After one dose of nivolumab (I was given a total of five doses), the drug simultaneously caused nerve and tissue damage in both hands. My hands have severe nerve damage and are very painful and are turning into 'skeleton hands' due to muscle or tissue loss. My shoulders and all other joints are now weakening and extremely painful. Nivolumab also has diminished my concentration and memory. This drug is not being tracked with its severe defects. My life has been shortened by its side effects."

• MJW...
• Taken for 1 to 2 years
• October 22, 2019

For Non Small Cell Lung Cancer "In April 2017, I was diagnosed with stage IIIB metastatic lung cancer, having gone to my lymph nodes. I had chemo and radiation, which shrunk the tumor in my lung and destroyed the cancerous lymph nodes. But the next scan showed new nodes involved, so I was started on Opdivo in September 2017. After one year on the drug, I showed No Evidence of Disease - cancer-free. I have continued to stay cancer-free, but the side effects have worsened over the last year. Severe fatigue, worsening shortness of breath, nerve spasms, hot sweats, muscle weakness, and pain. The side effects now are taking a toll, so I had my last infusion two weeks ago. Now it will take some time to start feeling better. I gave this drug a 9 because it saved my life and was tolerable for two years. I am very grateful, and I do believe I will start feeling better soon."

• bHa...
• Taken for 5 to 10 years
• August 3, 2025

Nivolumab for Renal Cell Carcinoma "I started receiving Opdivo in 2016 after 10 years of chemotherapy for my renal cell cancer. The Opdivo seemed to shrink or inactivate remaining tumors quickly (mostly lymph nodes). Main side effect was inflammation in non-cancerous tissue, causing swelling and pain in feet and knees at first. I started taking 10 mg Prednisone daily. Tremendous relief, but it weakened my bones, ligaments, and tendons. I tore a ligament in my hand and ruptured two biceps tendons. Recently, my immune system began attacking my intestines, and I had chronic diarrhea for around 50 days. Weight loss, nausea, etc. After high-dose Prednisone stopped the diarrhea, it came back 2 weeks after I resumed the Opdivo. Had a pretty good quality of life for most of the past 10 years, worked out hard, looked and felt like an athlete, but feel worn out now. Thin and tired. Fatigue is another major side effect, and it is profound. Overall, mostly positive response, but want to stop now."