Nivolumab and Vision Issues: What Users Say

• fLB...
• September 16, 2020

Nivolumab for Urothelial Carcinoma "My dad was diagnosed with SCCB, underwent chemo. After that, cystectomy with neobladder from parts of his intestine. The surgeon at MSKCC is top in the nation. Months later, a CT with biopsy showed metastasis in his lung, did fine with the Ipi/Nivo combo, but when switched to Opdivo alone, he has been having more issues than when he was first diagnosed. Fatigue, low BP (80/50), anorexia, insomnia, anxiety, depression, mood swings, vision problems, eosinophilia, anemia, and the list goes on. After reading the reviews on this medication, I’m trying to make sure he is not given it again. It has led to more specialist visits for him than ever. Everyone needs to discuss quality of life versus quantity with their loved ones, prior to starting these meds. If one is constantly in pain, unable to eat, sleep, think straight, is constantly exhausted and fatigued, etc., is that really even living? It’s heartbreaking, to say the least. It may work for some, but for others, it has done the opposite."

• tay...
• Taken for 1 to 6 months
• May 17, 2022

Nivolumab for Melanoma, Metastatic "Devastating life-threatening side effects. Started mouth breakouts, muscle, joint, and tendons swollen to the point of needing a wheelchair. Started 80 mg steroids to stop destruction of joints. After a month on 80 mg, started reducing steroids, then pituitary gland swelled, crushing optical nerves in both eyes. Permanent vision loss with blindness in one eye. Vision went from 20/20 to 20/200 in the left and 20/40 right. Thyroid damage came next, followed by sugar levels monitoring to start insulin. This week, it seems to be starting in the lungs and heart. Rapid heartbeat with skipping, and 3-month follow-up CT scan now shows lung damage. I ask for quality of life over quantity and was told this was safe and steroids could control side effects. Consulting with other doctors, they say 15-20% survive metastatic melanoma, and they do not know if those treated with Opdivo and survive are the same ones that would survive without taking it. Destroyed my life and will lead to an earlier death."

• 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."

• The...
• Taken for 1 to 6 months
• October 13, 2022

Nivolumab for Melanoma "My husband was diagnosed with stage III melanoma and had a softball-sized tumor removed 11/11/21. His first Opdivo treatment was at the end of December. He had some reactions to the medication - the second and final treatment was at the end of January. Ever since the first treatment, he has had mouth blisters/ulcers. He got 'black tongue.' Had double vision issues. Still has fluttering heart. He is suffering from severe arthritic pain. If we had realized the potential long-term effects, we wouldn't have started treatment. My husband has always been a healthy, active, hard-working kind of guy. He has been on various doses of prednisone ever since. (Adrenal insufficiency at this point, as well.) This drug has destroyed his quality of life. Please do your research. This drug was basically fast-tracked for approval. In addition, at $37,000 a pop for treatment...makes you wonder who has the patient's best interest at heart."

• mjw...
• Taken for less than 1 month
• June 24, 2024

"So far, I've had some vision issues (blurring/double vision [6th nerve palsy]) and my skin feels like it has been injected with a mild spice, especially in areas that have lymphedema and have had previous surgeries. I'm only 2 weeks in (one treatment with ipilimumab). I'm having 6 total treatments over 12 weeks and then some scans to determine if this is working."

• mjw...
• Taken for less than 1 month
• June 24, 2024

"So far, I've had some vision issues (blurring/double vision [6th nerve palsy]) and my skin feels like it has been injected with a mild spice, especially in areas that have lymphedema and have had previous surgeries. I'm only 2 weeks in (one treatment with ipilimumab). I'm having 6 total treatments over 12 weeks and then some scans to determine if this is working."