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User Reviews for Nivolumab

Also known as: Opdivo

Nivolumab has an average rating of 5.0 out of 10 from a total of 68 ratings on 42% of those users who reviewed Nivolumab reported a positive effect, while 51% reported a negative effect.

Condition Avg. Rating Reviews Compare
Hodgkin's Lymphoma 10.0
1 reviews 24 medications
Melanoma, Metastatic 8.0
4 reviews 14 medications
Renal Cell Carcinoma 5.8
10 reviews 16 medications
Melanoma 5.3
8 reviews 9 medications
Head and Neck Cancer 5.0
3 reviews 7 medications
Non-Small Cell Lung Cancer 4.7
39 reviews 41 medications
Small Cell Lung Cancer 1.0
1 reviews 11 medications
Urothelial Carcinoma 1.0
1 reviews 8 medications
Colorectal Cancer 1 reviews 22 medications
Summary of Nivolumab reviews 5.0 68 reviews

Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.

Reviews for Nivolumab

fLB September 16, 2020

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.”

1 / 10
Fl Shopper · Taken for less than 1 month May 29, 2020

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.”

1 / 10
Anonymous · Taken for 2 to 5 years May 24, 2020

Opdivo (nivolumab) for Non-Small Cell Lung Cancer: “My mom has stage 4 nslc on year 7. She started Opdivo 4 years ago and at age 74 she’s still going strong. Minimal side effects cancer is almost non existent.”

10 / 10
Broken hearted · Taken for 6 months to 1 year March 11, 2020

Opdivo (nivolumab) for Non-Small Cell Lung Cancer: “My husband had been fighting this horrible disease (NSCLC) for two years. At one point the dr. said he was in remission. But the dr. still wanted him to try opdivo. I honestly believe the opdivo was what finished him. He had been on the opdivo for 3 months when the dr. said sorry but you have 3 months left and we are not going to continue the opdivo. Basically he said go home and die. Unfortunately he died 2 weeks later.”

1 / 10
GCPYS · Taken for 1 to 6 months February 3, 2020

Opdivo (nivolumab) for Renal Cell Carcinoma: “Opdivo was the end for my husband!!! The doctors had been pushing this drug at us for 2 years. My husband finally decided to try it and 7 weeks after his first infusion he passed away due to complications from the medication!!! It caused pseudo diabetic symptoms, respiratory failure and numerous other complications!!! I would not recommend this treatment for anyone!!! I feel that they faked their trial runs to get funding for their experimental treatment!”

1 / 10
Vic · Taken for 1 to 6 months December 20, 2019

For Renal Cell Carcinoma: “I started opdivo as my 3rd line of treatment. I had very few side effects at first and could eat like a horse. Unfortunately I got really really bad flares of rheumatoid arthritis. I had a partial response but the lung and messintary tumors grew and the RA became a problem. I would take it again but unfortunately was not my savior. Best luck to the next person to try it”

5 / 10
MJW · Taken for 1 to 2 years October 22, 2019

For Non-Small Cell Lung Cancer: “In April 2017 I was diagnosed with stage IIIB metastatic lung cancer having gone to my lymph nodes. I had chemo and radiation which shrunk the tumor in my lung and destroyed the cancerous lymph nodes. But the next scan showed new nodes involved, so I was started on Opdivo in September 2017. After one year on the drug I showed No Evidence of Disease -cancer free. I have continued to stay cancer free but the side effects have worsened over the last year. Severe fatigue, worsening shortness of breath, nerve spasms, hot sweats, muscle weakness and pain. The side effects now are taking a toll, so I had my last infusion two weeks ago. Now it will take some time to start feeling better. I gave this drug a 9 because it saved my life and was tolerable for two years. I am very grateful. And I do believe I will start feeling better soon.”

9 / 10
Myfather · Taken for 1 to 6 months October 17, 2019

For Renal Cell Carcinoma: “Be very, very careful with nivolumab. Within just 8 weeks it caused an explosion of my father’s lung metastases from renal cell carcinoma. It caused fluid around his lungs and heart. It might be a miracle cure for some but for every person that it so called ‘cures’ it seems to caused disastrous consequences for 10 other patients. I would use extreme caution in deciding to take this medication. It is very unpredictable.”

Oldiebutgoodywife · Taken for 6 months to 1 year October 17, 2019

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.”

10 / 10
JS · Taken for less than 1 month September 26, 2019

For Non-Small Cell Lung Cancer: “Opdivo caused increased intracranial pressure or demyelination to my my mom 3 weeks after her first IV dose (stage IV NSCLC -- slow metastasizing type of cancer). She was having trouble speaking as her first adverse effect. Health care practitioners were unable to tell what exactly caused it because this drug is so new. She was given the only thing the books tell them to do in such situations; high doses of steroids. She faded fast and died about a month after her first treatment. This drug is not for everybody, I wish I knew of these reviews before she started treatment. By then it was too late.”

1 / 10
Paddleman · 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 neck. Aside from some itchiness , fatigue, achy muscles and joints, I tolerate the regime. 18 months later after being told not much can be done. I'm fortunate to respond. Grateful !”

9 / 10
Brad · Taken for 2 to 5 years September 19, 2019

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.”

10 / 10
hesees July 31, 2019

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?”

10 / 10
Ray · Taken for 1 to 2 years July 17, 2019

Opdivo (nivolumab) 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.”

9 / 10
WAnn July 10, 2019

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.”

NoCalgirl · 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 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 regimen 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.”

8 / 10
Ivy M · Taken for less than 1 month May 6, 2019

Opdivo (nivolumab) 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.”

3 / 10
D April 24, 2019

Opdivo (nivolumab) for Small Cell Lung Cancer: “Writing this review on my fathers behalf, may he Rest In Peace. He got diagnosed with stage 4 small cell lung cancer with metastasis in the liver and lymph nodes. After his first round of chemo they did a new CT scan and PET scan, miraculously the doctor said the cancer is reduced to scarring and continued the radiation preventively. Three months later he is back in the hospital and things are not looking good, yet stable. From the first dose of Opdivo it was a rapid decline. He passed away within 24 hour of the second dose on Feb 14. He couldn’t eat or sleep, he couldn’t talk or walk, his face was dropping and he had a cough that wouldn’t give up. I can’t help but feel that they used my dad as some sort of lab rat to test this on. I know that cancer is terrifying and I know that u may feel there are not many options, but please consider finding another option than this medication. My father was strong even in his final moments but I genuinely feel he would still alive if not for these meds”

1 / 10
Faith · Taken for 1 to 6 months April 4, 2019

Opdivo (nivolumab) for Renal Cell Carcinoma: “I was on Opdivo for 4 months for stage 4 RCC. Felt good with diarrhea was the only side effect until I got blurry vision in one eye. During those 4 months I had no increase in the side of the tumors.”

5 / 10
Robert · Taken for 1 to 6 months December 11, 2018

For Melanoma: “I had two treatments of Nivolumab two weeks apart. When I went in for my third treatment I mentioned that my muscles were sore. They did not do the third treatment and recommended that I see a Rheumatology Doctor. Saw her one week later and she sent me for blood work. Got a call that night that my sugars were above 600 and I needed to check into my preferred Emergency room. Spent 3 days in the hospital adjusting my sugars. At home I have to test my blood 4 times a day and inject insulin according to the numbers. They do not think my pancreas is improving and that I might have to continue this for life. "Diabetes". A week later it was discovered that my Thyroid was very low. Now on Thyroid medication. Debated whether to even start Nivolumab injections, because of all the side effects, but were advised by most of my doctors to start it and then I could always stop if side effects occurred. I guess you're damned if you do and damned if you don't. Live and learn.”

1 / 10
Jamie · Taken for less than 1 month December 10, 2018

For Non-Small Cell Lung Cancer: “My husband had NSCLC 2011 then 2013 it went to his head. After many rounds of chemo between 2013 and 2017 they weren’t working anymore. Opdivo was the answer for the drs. He was to have his 2nd opdivo treatment and on the very day I woke to him seizing in our bed. After ER trip we found out he had blood clots all up one side of his head and he died 3 days later.”

1 / 10
Babette · 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.”

10 / 10
Amos October 17, 2018

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.”

1 / 10
Scarlett · Taken for 1 to 6 months October 12, 2018

Opdivo (nivolumab) for Non-Small Cell Lung Cancer: “My mom is 78 years old with stage iv lung cancer. She has had 6 treatments with Opdivo so far; minimal side effects. She was on Pemetrexed for 2 years, then in remission for almost 18 months. Her oncologist wanted to try Opdivo. A 93 year old gentleman who comes to the same cancer clinic biweekly, has been on Opdivo for 2 years now for melanoma. His daughter stated that he has minimal side effects from the medication.”

8 / 10
KK · Taken for 1 to 2 years October 7, 2018

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 .”

10 / 10

This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.