Nivolumab and Rash: What Users Say

• Old...
• Taken for 6 months to 1 year
• October 17, 2019

Nivolumab for Melanoma "My husband has stage 4 melanoma that developed tumors in both lungs, 2 years after the melanoma was surgically removed. His infusions were a combination of Yervoy and Opdivo. His tumors have shrunk to being almost undetectable on the left side and very small on the right. No side effects except a rash, which was treated with steroids or ointment. We are beyond thrilled. This is an amazing medication."

• 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?"

• Bun...
• Taken for 1 to 6 months
• August 2, 2017

Nivolumab for Non Small Cell Lung Cancer "My mother had ovarian cancer, then non-small lung cancer. This drug, in our family opinion, was terrible. We feel it hastened her death, and she would have been better off without it. Terrible side effect - she was covered with some type of horrible rash after the second round. And in the hospital. Every time she took it, she would get worse. She got to where she couldn't walk. I think she would have had a better end of life without this. It felt like they were using her for money. :("

• WAn...
• July 10, 2019

Nivolumab for Melanoma, Metastatic "I have been on this treatment since April 2018 and only got sick 2 times. Besides vitiligo, skin rash, and my thyroid being messed up, this treatment has been great for me. My melanoma moved from skin issue to lymph nodes. The original large lymph lump has gone down immensely in size but has not completely gone away, even though scans show it to be non-malignant. The other nodes throughout my body vanished with this treatment, and I am so glad I opted not to have any removed before treatment. It is July 2019, and I am still being treated monthly. Best wishes to others, this has been a godsend to me."

• 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."

• Pow...
• January 19, 2017

Nivolumab for Non Small Cell Lung Cancer "I have been taking Opdivo since March 2016. My cancer is now in my liver, and the medicine seems to be keeping the cancer strictly in my liver, due to a PET scan in 12-2016. I have developed a red rash and found that lotion and creams do help. Lately, I have noticed my nails looking strange, and the thumbnails look like they may come off. Have not discussed with my doctor, and will do so at the next appointment. My cancer started in a knot on my neck and in my lung as stage 4. I only have the cancer in my liver. I am unsure as to what I will do considering that cancer has been contained to my liver only. I have had cancer since August 2013."

• Bab...
• Taken for 2 to 5 years
• December 2, 2018

For Non Small Cell Lung Cancer "Diagnosed with NSCL Stage III B in December 2003. After 6 treatments (carboplatin/taxotere), was told that I was stable, but disease would come back within 2 years, and then I would have 6 months, and that would be it. In May of 2016 (after x number of chemo treatments), I was put on Opdivo and have felt great ever since. I use lots of body lotion after showers to keep the occasional rash in check. This is the only side effect I have to deal with. Love Opdivo and the carefree life it gives me."

• 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."

• Rob...
• Taken for 2 to 5 years
• September 27, 2021

Nivolumab for Colorectal Cancer "I have been dealing with abdominal tumor growth for 15 years. I started Opdivo three years ago after two scans that showed tumor growth. It kept my tumors from growing for 2.5 years. I had almost no side effects. Just occasional loose stools and occasional rashes that were not itchy and went away in a few days. I started taking it every 2 weeks and then moved to once a month. I was in and out of labs and infusion in 1.5 hours, so I never needed to miss work."

• NoC...
• Taken for 1 to 2 years
• May 17, 2019

For Melanoma "My boyfriend was diagnosed with Stage IIIC melanoma in February 2018. I am fairly sure he had been sick for a few years prior to diagnosis. He had a 5.5 cm tumor excised from his upper arm and 18 axillary lymph nodes removed (one node lit, thus the IIIC staging diagnosis). Opdivo 480 once per month started in March 2018. He finished his last infusion on 4/2/2019. No evidence of disease as of the last PET scan. The side effects have been extreme fatigue, muscle aches, diarrhea, and rash. He has and continues to take prednisone daily. He also has prescription steroid creams for the rash. He expected to feel better right away after his final infusion, this has not happened yet. Still very low energy, and he sleeps a lot. Hoping he feels better very soon. Considering that until the last few years, only traditional chemo regimens and/or interferon were available, we consider ourselves quite fortunate that Opdivo was made available. Time will tell. I hope an actual cure is found soon."

• IRS...
• Taken for 10 years or more
• June 15, 2023

For Melanoma, Metastatic "I joined the drug trial CA209-066 in June 2013 (in Australia). I was randomized to nivolumab. Nine weeks after my first dose, there was a 30% to 50% reduction in the size of my tumors. Sixteen weeks after my first dose, I was diagnosed with uveitis (an autoimmune inflammation of the eye). Thirteen months after my first dose, the trial was 'unblinded'. Twenty-one months after my first dose, a scan showed 'no evidence of metastatic disease'. I have been receiving nivolumab for 10 years and remain cancer-free. Side effects include uveitis and a skin rash."

• 921...
• Taken for 1 to 2 years
• April 21, 2017

For Non Small Cell Lung Cancer "Very positive till mouth sores and rash. Truly love the drug, so much better than chemo. Allows me to do things I couldn't under chemotherapy."