User Reviews for Nivolumab
Brand names: Opdivo
Nivolumab has an average rating of 4.9 out of 10 from a total of 103 reviews on Drugs.com. 41% of reviewers reported a positive experience, while 54% reported a negative experience.
Condition | Avg. Rating | Reviews | Compare |
---|---|---|---|
Non-Small Cell Lung Cancer | 45 reviews | 51 medications | |
Renal Cell Carcinoma | 15 reviews | 19 medications | |
Melanoma | 13 reviews | 10 medications | |
Melanoma, Metastatic | 11 reviews | 14 medications | |
Colorectal Cancer | 5 reviews | 25 medications | |
Head and Neck Cancer | 5 reviews | 7 medications | |
Esophageal Carcinoma | 4 reviews | 8 medications | |
Malignant Pleural Mesothelioma | 2 reviews | 4 medications | |
Urothelial Carcinoma | 2 reviews | 7 medications | |
Hodgkin's Lymphoma | 1 reviews | 24 medications | |
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Reviews for Nivolumab
Opdivo (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 achey 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 IV's and I'm weaning off it right now but the rash is so itchy and nothing takes it away! Too many reactions..."
Opdivo (nivolumab) for Non-Small Cell Lung Cancer "My mom started this treatment after her oncologist suggested that it was an alternative to other Chemo because is it was not as harsh. Well after her initial treatment ($27,000) she started swelling, couldn't eat, no energy, confused basically confined to her bed, and then the 2nd treatment, she had developed pneumonia and was hospitalized 4 days later, mom passed after 4 days, numerous antibiotics, blood transfusions and a lot of agony. I would not recommend this treatment to anyone. Its awful with life threatening side effects. I think this is just a money racket to get cash from the dying and the government."
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Opdivo (nivolumab) for Renal Cell Carcinoma "December 25, 2021 diagnosed with stage four clear cell renal cell carcinoma that had gone to my lungs (non small cell lung cancer). Soft ball sized tumor on my right kidney and numerous ping pong ball sized tumors in both lungs. No outward signs that I was ill. January 19, 2022 received my first infusion. Combo Opdivo with Yervoy by infusion. Two weeks into first infusion I developed a facial tumor that tested out to be clear cell renal cancer in origin. Drs wanted to start me on Cabometyx but I declined. One week later just prior to my second infusion that tumor had vanished and was only a small sub dermal bump (subsequently all evidence of that tumor was gone). I just received my 15 th infusion today ( 4 combo Opdivo/Yervoy at 3 week intervals and now my 11th Opdivo 480 mgs once a month). My tumors, both in my lungs and on my kidney, have shrunk by 60 % and I’ve had almost no side effects (slight fatigue, minor itching, some muscle/bone pain). It’s working for me."
Opdivo (nivolumab) 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 life span. Treatment consists of a monthly half hour IV drip."
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Opdivo (nivolumab) 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 & 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. First infusion of opdivo was November 23, 2016. By Thansgiving, November 24, he was not feeling well, so Thanksgiving was cancelled. On December 5, he had severe stomach pain, so he went to ER and was admitted. He was discharged on December 8. He passed away Dec 14, 2016."
Opdivo (nivolumab) for Melanoma "My husband has stage 4 melanoma that developed tumors in both lungs 2 years after the melanoma was surgically removed. His infusion were a combination of the 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."
Opdivo (nivolumab) for Non-Small Cell Lung Cancer "My Dad started Optivo in May 2017, by the second treatment he was terrible sick, weak, no appetite, upset stomach and talking out of his head and confused. By the third treatment he 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 was 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."
Opdivo (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."
Opdivo (nivolumab) 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 down hill from there. She had pneumonia and joint pain, diarrhea etc, the side effects were worst then the cancer. I would not recommend this drug to anyone, taking this drug was a HUGE set back for my mom, she passed away yesterday 11/21/16. Please do your homework before taking it."
Opdivo (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?"
Opdivo (nivolumab) for Non-Small Cell Lung Cancer "took it after chemo stopped working.after 2 years...first 2 infusions went ok...3 days after 3rd infusion..my legs/feet stopped working..stayed in hospital 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"
Opdivo (nivolumab) 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 ."
Opdivo (nivolumab) for Non-Small Cell Lung Cancer "My husband had 2 treatments, by the 3rd scheduled appt. he had died. My husbands primary cancer was renal carcinoma which spread to 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."
Opdivo (nivolumab) 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 had a double by pass surgery. July 2014, it matastised to the brain. Gamma knife shrunk the 2 tumors In September 2014 started another round of chemo, but 2 months later he had a TIA, they took him off the chemo. In September 2016 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 any one else been dealing with depression and severe mood swings on this drug?"
Opdivo (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 with out it. Terrible side effect - she was covered with some type of horrible rash after the second round. And in 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. : ("
Opdivo (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 barley stand it"
Opdivo (nivolumab) 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."
Opdivo (nivolumab) 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!"
Opdivo (nivolumab) 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."
Opdivo (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 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."
Opdivo (nivolumab) 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."
Opdivo (nivolumab) 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."
Opdivo (nivolumab) for Melanoma, Metastatic "Devastating life-threatening side effects. Started mouth breakouts, muscle, joint. and tendens 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 steroid 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 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 show 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 Opvido and survive are the same ones that would survive without taking it. Destroyed my life and will lead to and earlier death."
For Renal Cell Carcinoma "I've had 7 two weekly infusions and so far I've had no side effects, none! After 6 infusions I was scanned and I was told it was working really well. My kidney cancer in my chest lymph glands have shrunk and the kidney cancer that has spread to my lungs has also shrunk! Nivolumab is my second line of attack, the first being Pazopanib. I only got 4-5 months out of Pazopanib, but I had quite a lot of side effects with it. So taking nivolumab and having no side effects is a real godsend. I haven't felt this good in 4 years, I feel stronger and I'm putting the weight back on I lost taking Pazopanib. Hair/have returned to normal colour. I hope this lasts a long time for me and I hope this post helps in some way. Good luck and God bless all."
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Opdivo (nivolumab) 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."