Generic Name: Opdivo (nivolumab)
Opdivo Reviews
For Non Small Cell Lung Cancer "Original diagnosis stage IV lung cancer, July 2013. Received chemotherapy every 3 weeks for two years. July 2015 PET test showed cancer had metastasized to liver. Started on Opdivo August 2015. I have been on Opdivo every two weeks since August 2015. Last CAT scan (June 2016) tumor in liver is shrinking AND NO LONGER ANY TUMORS IN EITHER OF MY LUNGS. Slight side effects: minimal, slight body aches, and tiredness."
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..."
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."
For Renal Cell Carcinoma "Saved my life. Been on Opdivo (Nivolumab) for 3.5 years after being told I was about to die. All my tumors have shrunk, if not disappeared altogether. No side effects! CT scans are clear. No cancer symptoms. Doctor says I could live a normal lifespan. Treatment consists of a monthly half-hour IV drip."
For Non Small Cell Lung Cancer "My husband was diagnosed with NSCLC in late April 2016. Started on chemo treatments in May 2016. Received 6 rounds of chemo. His first scan, I believe it was after 2 rounds of chemo, came back 'great news', cancer had shrunk, and some spots disappeared (or were hiding). He continued with chemo and had another scan in November 2016, now there were some new spots. His oncologist said he could not receive any further chemo treatments and wanted him to start on Opdivo. The first infusion of Opdivo was November 23, 2016. By Thanksgiving, November 24, he was not feeling well, so Thanksgiving was canceled. On December 5, he had severe stomach pain, so he went to the ER and was admitted. He was discharged on December 8. He passed away Dec 14, 2016."
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."
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."
For Non Small Cell Lung Cancer "My mom started on radiation and chemo, traditional chemo did not work because the cancer had spread to her bone marrow. Her doctor started her on Opdivo, and she went downhill from there. She had pneumonia and joint pain, diarrhea, etc. The side effects were worse than the cancer. I would not recommend this drug to anyone. Taking this drug was a HUGE setback for my mom, she passed away yesterday, 11/21/16. Please do your homework before taking it."
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?"
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."
For Melanoma "My sister (age 35) was diagnosed with melanoma April 2018. The cancer had spread to her Lymph-nodes but was confirmed to have not spread to any organs. In May 2018, after removal of 40 lymph-nodes, she had “no detectable melanomas”. She immediately began her infusions. Pain started within the first 2 treatments, but was determined to be a side effect of this treatment. Then in early September she was in such pain she went to the emergency room. It was shortly confirmed that she had large tumors were pretty much everywhere except her brain. Within 3 weeks she died. This treatment in no way worked, indeed her oncologist believes it actually accelerated her melanoma. Please consider not using this treament, it is like playing a game of roulette! For those that it doesn't work on, it REALLY doesn't work. She would have lived much longer by just dealing with the tumors as they arose and without the last 3 months of her life filled with terrible pain."
For Non Small Cell Lung Cancer "My husband had 2 treatments. By the 3rd scheduled appointment, he had died. My husband's primary cancer was renal carcinoma, which spread to the lung after 3 years. He started having a stiff neck with a lot of pain, very low blood pressure, and later developed an intracranial bleed. That was it, over. I really believe the drug may have caused more problems than good. Like the previous reviewer said, do your homework."
For Non Small Cell Lung Cancer "I started Opdivo in 2010 to 2012 had stage IV lung cancer it is now 2018 and living a normal life. Thanks for this product it saved my life . In 2010 the life expectancy was only 1 to two years on chemo ."
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."
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. :("
For Non Small Cell Lung Cancer "My husband was diagnosed with non-small cell lung cancer in October 2012. He had surgery to remove 1/3 of his lung, chemo, and radiation. In July 2013, he had a double bypass surgery. In July 2014, it metastasized to the brain. Gamma knife shrunk the 2 tumors. In September 2014, he started another round of chemo, but 2 months later he had a TIA, they took him off the chemo. In September 2016, he started Opdivo. Doing well, no new tumors in the lungs or brain. Side effects are severe tiredness, sleeps all the time, body aches, depression. His quality of life is very bad. The depression really worries me. Has anyone else been dealing with depression and severe mood swings on this drug?"
For Non Small Cell Lung Cancer "My husband had stage 3B NSCLC with a small metastasis on his spine. Oncologist recommended Opdivo. Only had 2 treatments. After the first treatment he ended up in hospital with severe shortness of breath. He passed away a few days after the second treatment as the drug attacked healthy heart muscle. Don’t try this drug!"
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 if 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 God send to me."
For Urothelial Carcinoma "My dad was dx with SCCB, underwent chemo. After that, cystectomy w neobladder from parts of his intestine. The surgeon at MSKCC is top in the nation. Months later, a CT w biopsy showed metastasis in his lung, did fine with the Ipi/Nivo combo, but when switched to the 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."
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 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 you doctor know if they appear."
For Renal Cell Carcinoma "I was on drug for almost 2 years, It worked for my bone metastasis and it shrunk my tumor in right kidney. Stage IV RCC, I was able to stop and been stable over a year now without medication. Hoping it will continue to work for a while."
For Non Small Cell Lung Cancer "My husband was told he had 6-8 months to live. He had radiation and chemo and did well. After 14 months, his MRI showed an increase in size of his tumors. Six weeks before he died we were on a cruise. Four weeks after this his doctor wanted him to try Opdivo. He was dead within 7 days. Please read all you can about these drugs before making a choice."
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."
For Non Small Cell Lung Cancer "My father was diagnosed with stage IV lung and brain cancer back in 2015. He went through chemo and then 2 years of Opdivo. Now, 6 years later, he’s cancer free. How does that even happen? He never complained about any side effects but he also doesn’t share or just doesn’t feel things. I’m sorry for those that had bad experiences with this medication but it seem to be a miracle for others."
For Non Small Cell Lung Cancer "My husband was given opdivo for stage IV non-small cell lung cancer. Three days after his third treatment, he became seriously ill (short of breath, fatigue, increased oxygen requirements) and was hospitalized. His oxygen needs increased from a baseline of 5L to 13L upon admission. Three days later, his oxygen needs increased to 30L and he passed away 10 days after his third treatment. I believe that Optivo contributed to his death at age 57. Looking back, he should never have started this medication."
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