Nivolumab and Weakness: What Users Say

• Ter...
• July 20, 2017

Nivolumab for Non Small Cell Lung Cancer "My dad started Opdivo in May 2017. By the second treatment, he was terribly sick, weak, no appetite, upset stomach, talking out of his head, and confused. By the third treatment, he had so much fluid in his feet and was so weak he couldn't even move himself in bed. They should have never done a third treatment but were more concerned about the price of the treatment. My dad died a week and a half later. In my opinion, he spent the last part of his life miserable because of this medicine."

• gga...
• July 24, 2016

Nivolumab for Non Small Cell Lung Cancer "Took it after chemo stopped working. After 2 years, first 2 infusions went okay. 3 days after the 3rd infusion, my legs/feet stopped working. Stayed in the hospital for 4 days, legs/feet slowly coming back. Ran every test known to man, all normal. Conclusion is a side effect of Opdivo. Now off all treatment, trying to resolve. Better but still some weakness and balance issues."

• Ivy...
• Taken for less than 1 month
• May 6, 2019

Nivolumab for Melanoma "After two treatments of Opdivo for melanoma, my father experienced many of the side effects, including muscle weakness, swelling (including in his brain), loss of appetite, constipation, droopy eye muscles, blurred vision, and irregular heartbeats and blood pressure. He is currently being treated at the Mayo Clinic in the ICU. He is the third case they have seen with similar reactions, but they are having trouble treating the side effects. Thankfully, he sought help before the symptoms worsened. My advice is to learn the side effects and immediately let your doctor know if they appear."

• For...
• Taken for 1 to 6 months
• July 8, 2016

For Non Small Cell Lung Cancer "My husband started on Opdivo in late January 2016 after just a slight change in his NSCLC adenocarcinoma. Almost immediately, he stopped eating, and it was like he went over a cliff. None of the doctors thought it was the Opdivo. They thought he was having stomach issues, and nothing made sense. He got so weak by the fourth treatment I was not going to let him have a fifth. When they checked him, he was almost in adrenal failure. Heartbreaking. He regained some strength, but not much. I lost my best friend, the love of my life, my husband, my partner on May 27, 2016, at 4:57 pm. This time last year, he was baling our hay for our farm on a rough chemo mixture. The toughest man ever. I hate Opdivo, and I hate cancer."

• kde...
• Taken for 1 to 6 months
• February 3, 2023

Nivolumab for Urothelial Carcinoma "My dad was diagnosed with bladder cancer that spread to his prostate, and in August 2022, he had both removed. In October 2022, he started taking Opdivo. After two treatments, he developed a rash and was treated with steroids. In mid-November, he had another treatment along with a steroid IV to counteract another rash. However, he gradually worsened. He developed a fever, became weak and tired, lost his appetite, experienced severe back pain, and had a cough. He had another treatment at the end of December. At the end of January 2023, we took him to the emergency room where he was diagnosed with pneumonia in his lungs, a kidney infection, a blood clot in his right leg, and a blood clot near his heart in his lung. He also had mild fluid surrounding his heart and gastroparesis. It is February 3rd and he is still in the hospital. The doctors have confirmed through dye and X-rays that gastroparesis is a side effect of Opdivo and not caused by a blockage or mass. They are trying to figure out how to treat him as steroids are not working. Our experience with Opdivo has been thumbs down. If only we had known beforehand."

• Gra...
• December 4, 2015

For Non Small Cell Lung Cancer "36-40 hours after the 3rd treatment, muscles and legs were so weak could not support self or move feet. Could barely shuffle. 4 days in hospital and all tests and scans normal so had to be the Opdivo. Will not take that again, not worth inability to walk."

• For...
• Taken for 1 to 6 months
• November 24, 2021

Nivolumab for Renal Cell Carcinoma "Daddy was on this for about 6 months. Would have been longer if his cancer didn't spread to his brain. This does not cross the blood-brain barrier. This was the best medicine he ever took. Took in combination with Yervoy. Daddy had clear cell RCC. It was in his stomach, liver, lung, and right atrium (heart) at the time. This medicine got rid of the cancer in his stomach, atrium, and lungs. I highly recommend this medicine. Daddy was still working as an automotive mechanic while taking this medicine. Side effects were minimal. The only thing is his immune system seemed to be more weak. That was it. He also had no kidneys left from the cancer. So he was on dialysis. I wish he could have stayed on this."

• J P...
• Taken for less than 1 month
• March 24, 2022

Nivolumab for Melanoma "I had a spot of melanoma skin cancer on my side, and it spread to two lymph nodes. All the cancer was removed by surgery. No more cancer, but Opdivo was strongly recommended as a preventative. I was told there may be side effects with Opdivo, but had no idea of what that really meant, or how severe they could be. I was put on the once-a-month regimen, so I was given the double dose. A few days later, my daughter rushed me to the hospital with a fluttering heart and a pulse way over a hundred. My body was beginning to experience massive inflammation. Opdivo attacked my heart, thyroid, liver, eyes (double vision), severe muscle pain, no control of bowels, severe rash and itching, extreme weakness. I was put on six weeks of prednisone to, as they said, 'put out the fire.' The Opdivo had already done its damage to my heart, I had to have a catheter ablation, and I will be on thyroid medication the rest of my life. Don't just jump into Opdivo, do your own research, or have someone help."

• 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."

• 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."