Nivolumab and Itching: 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..."

• hes...
• July 31, 2019

Nivolumab for Non Small Cell Lung Cancer "I had NSCLC. I found out about April of 2018. The hospital I was going to tried radiation and chemo. The cancer had moved to the lymph nodes in my neck. The radiation shrank it some, but it came roaring back. My oncologist started me on Opdivo about October of 2018, and it has been smooth sailing so far. Here it is July 31, 2019, and I look forward to maybe only one or two more treatments. My last two PET scans have been good. There is no doubt in my mind that I am alive because of this treatment. I have had some shortness of breath, quite a lot of fatigue, a rash or two, some itching... Nothing unbearable, just uncomfortable. I am grateful for this technology. Having said that, I quite understand that people who have had negative experiences might even hate it, but how could I not give myself this chance?"

• wol...
• August 29, 2016

Nivolumab for Non Small Cell Lung Cancer "After chemo and radiation, started on Opdivo, had 8 treatments with the only side effect being sore mouth. Dr. took me off of it because my scans didn't show much progress, sent me to Cleveland Clinic, and they said to start back on it. Now have sore mouth and my skin is so itchy I can barely stand it."

• Jne...
• December 27, 2017

Nivolumab for Non Small Cell Lung Cancer "My husband has Stage 4 non-small cell lung cancer. He is 82 years old. He has been on Opdivo for 18 months. It has kept his cancer in remission with no new metastasis. He has some itching, but no other side effects. It has been a wonder drug for him."

• 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."

• Pad...
• Taken for 1 to 2 years
• September 26, 2019

For Head and Neck Cancer "Nivolumab has provided hope. With no more surgeries or radiation, this drug has stabilized my reoccurred tumor in my neck. Aside from some itchiness, fatigue, achy muscles, and joints, I tolerate the regimen. 18 months later, after being told not much can be done, I'm fortunate to respond. Grateful!"

• Wal...
• Taken for 6 months to 1 year
• January 11, 2025

Nivolumab for Melanoma "I was diagnosed with stage 4 melanoma that had metastasized to my left lung. I had real good success with this treatment. Had a couple side effects, but nothing serious. I received treatments for 10 months and I was in remission. Just starting to see some more side effects: swollen ankles, wrist joints, and itching. Other than that, I am happy with the results."

• 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."