Nivolumab and Swelling: What Users Say

• Dav...
• August 11, 2017

For Non Small Cell Lung Cancer "My mom started this treatment after her oncologist suggested that it was an alternative to other chemo because it was not as harsh. Well, after her initial treatment ($27,000), she started swelling, couldn't eat, had no energy, was confused, basically confined to her bed, and then the second treatment, she developed pneumonia and was hospitalized 4 days later. Mom passed after 4 days, after numerous antibiotics, blood transfusions, and a lot of agony. I would not recommend this treatment to anyone. It's awful with life-threatening side effects. I think this is just a money racket to get cash from the dying and the government."

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

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."

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

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."

• Lon...
• Taken for 6 months to 1 year
• November 21, 2022

For Malignant Pleural Mesothelioma "I have peritoneal mesothelioma. This drug, along with Yervoy, gave me colitis and caused me to be adrenal insufficient. The treatment was worse than the cancer. I’ve had 3 infusions of Opdivo, and the 1st and 3rd were combined with Yervoy. Each infusion gave me a worst case of colitis. The colitis required steroids to combat its symptoms of vomiting and diarrhea. Each of the 4 times my doctors tried to wean me off the steroids and stopped them, within 2 days I would end up in the hospital because of vomiting and diarrhea and dehydration. After the 3rd infusion, the steroids were ineffective in treating the colitis, I was in one hospital for almost a month while they kept giving me steroids thinking it was treating the colitis. When I went to a different hospital, one that specializes in cancer care, they immediately discovered that I had inflammation and infection in my esophagus and small and large intestines after an endoscopy and colonoscopy, proving that the steroids no longer were effective in treating the colitis."

• PRo...
• Taken for 2 to 5 years
• October 31, 2022

For Non Small Cell Lung Cancer "I've been on Opdivo for 4 years. I was diagnosed with Stage 3 lung cancer on Feb. 7, 2018. I had chemo once a week for about 3 months, but radiation 5 days a week at the same time. Then, a month and a half later, more radiation for about another 5 weeks. Started Opdivo treatments in Sept. 2018. I go every other Friday. My side effects were/are joints aching, with swelling. Get tired and feel fatigued at times. Had some weight gain also."

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

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."

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

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."