Nivolumab User Reviews & Ratings (Page 3)

• SF ...
• Taken for 1 to 6 months
• June 15, 2021

Nivolumab for Melanoma, Metastatic "My friend Jason was given this drug for melanoma. He had a spot removed on his leg, and his lymph nodes were removed. After that, the doctor said he was cancer-free but suggested he take this drug to stay in remission. The drug attacked his brain and caused him to lose the ability to talk, walk, and have proper motor skills, and he spent nine months in a hospital bed in utter frustration and anger, unable to do anything on his own, including going to the bathroom. There was no recourse. Once it did the damage, it was irreversible. He died almost a year later. Cancer was all over his body. He was 47."

• day...
• Taken for 1 to 2 years
• March 15, 2024

Nivolumab for Melanoma, Metastatic "Started Opdivo almost two years ago. When diagnosed with metastatic melanoma, I was suggested I had about 6 months to live. My Oncologist started me immediately after confirming I had metastatic melanoma. I have only seen low sodium levels just at the lower threshold. A little tired following infusion. I feel this therapy has extended my life for certain. I'm glad it is available at this time. 10-15 years ago I wouldn't be so lucky."

• Rob...
• 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 three days in the hospital adjusting my sugars. At home, I have to test my blood four 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 was 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."

• 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."

• Lea...
• July 18, 2017

For Non Small Cell Lung Cancer "Love this stuff, works miracles. I was stage 4, spread to numerous lymph nodes. I was diagnosed in June 2016 and started chemo, which knocked the hell out of me, only on chemo for three months. Then started Opdivo. After only 15 treatments, I am cancer-free. I have never had any side effects, gained more weight than I needed, and actually feel better than I ever have. It doesn't work for everyone, I think about 20%, which I think is roughly the same for chemo. It's sad we need something that works for 100%."

• Pad...
• 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 my neck. Aside from some itchiness, fatigue, achy muscles, and joints, I tolerate the regimen. 18 months later, after being told not much can be done, I'm fortunate to respond. Grateful!"

• big...
• Taken for 2 to 5 years
• March 8, 2018

Nivolumab for Melanoma, Metastatic "Been on Nivolumab and Opdivo for 27 months with a small amount of side effects and great success in tumor reduction. Merkel cell (MCC) is what I have and went through several chemos and radiation, and this treatment is working great on this cancer. Merkel cell MCC is one of the cancers that foundations do not help with, so these patients are on their own. Pricey, but it does make a difference in the length of your life."

• Cha...
• Taken for 1 to 2 years
• December 20, 2023

Nivolumab for Renal Cell Carcinoma "This is a follow-up to my February 2023 posting. I've completed my 24th Opdivo infusion with no adverse side effects. I've already scheduled number 25 and 26. Yesterday, I had my first-ever PET scan. My results were totally unexpected - NED, no evidence of disease (remission). I will be meeting with my doctor to plan my future course of treatment. I believe my Yervoy/Opdivo treatments have saved my life. Stage 4 CCRCC with NSCLC is not the end, it's a starting point. Explore all your options and go forward."

• Joy...
• Taken for 6 months to 1 year
• November 9, 2022

Nivolumab for Esophageal Carcinoma "Stay away from this drug if you have esophageal cancer. It won’t work for you but will destroy any 'itis' you might be susceptible to. It destroyed my husband’s thyroid, and they could never get it back to normal with meds. After 9 infusions, by month 10 his esophageal cancer was back with a vengeance. Opdivo does no good for esophageal patients. Just makes things worse."

• 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."

• Anonymous
• Taken for 1 to 6 months
• October 17, 2022

Nivolumab for Melanoma, Metastatic "I had melanoma in my lung, large intestine, and thigh. I am also on dialysis. I took a six-month course of Opdivo and had no cancer cells at that time. Five years and PET scans later, I am still cancer-free. Yes, Opdivo is a tough regime of medicine: very tired, achy, depressed, anemia, and at the end, some sort of acute lung problem (that's when they took me off the medicine). After I stopped taking Opdivo, it still took four months to get it out of my system. Was it worth it? Damn right."

• DDE...
• Taken for 10 years or more
• October 3, 2023

Nivolumab for Melanoma, Metastatic "At my appointment for the second infusion of Opdivo, it was discovered that I had lost 15 pounds, and I recalled that I was experiencing frequent urination, extreme thirst, and fatigue. My previously normal blood glucose and A1C were always normal. At this visit, my blood glucose was 680!! My doctor informed me that my immune system had attacked my pancreas, causing irreversible Type 1 Diabetes. I will be on insulin for the rest of my life. I was in the hospital for 4 days to get my blood glucose down and to learn how to monitor the readings, count carbs, and inject myself with insulin. Time will tell if the Opdivo is going to help with the melanoma. Repeat of PET scan in 3 weeks."

• 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 mesenteric tumors grew, and the RA became a problem. I would take it again, but unfortunately, it was not my savior. Best luck to the next person to try it."

• Myf...
• 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 cause disastrous consequences for 10 other patients. I would use extreme caution in deciding to take this medication. It is very unpredictable."

• Cor...
• Taken for 1 to 6 months
• July 20, 2022

Nivolumab for Esophageal Carcinoma "Don’t take this drug, it only causes harm. After 4 treatments, it fried my thyroid and my adrenal glands. I’ve gone through hell for months as they try to adjust my medication. I will have to deal with this for the rest of my life. Your own immune system destroys your organs quickly."

• JSa...
• Taken for less than 1 month
• September 26, 2019

For Non Small Cell Lung Cancer "Opdivo caused increased intracranial pressure or demyelination to 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. Healthcare 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."

• 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."

• Kim...
• Taken for less than 1 month
• April 24, 2017

For Non Small Cell Lung Cancer "My dad was diagnosed last August 20, 2016, with stage 4 lung cancer. He came home from the hospital, and he started chemo right away. He had about 7 rounds of regular chemo. We thought he was doing so well. He had a scan in December, and they said it was stable. Still continued treatment through February. In the middle of March 2017, my dad went in the hospital. He was there for 10 days. Dr. said the cancer was spreading, he needed treatment. The new treatment, Opdivo, brought him home, and 3/29/17 my dad had his first treatment of Opdivo. My dad seemed to start going downhill, couldn't walk, was having a hard time breathing. He never made the 2nd treatment, my dad died 4/19/2017. I am not saying it was from the Opdivo, but it sure makes me wonder."

• My...
• Taken for 1 to 6 months
• September 8, 2016

"My husband fought carcinoid cancer for 6 years. He kept getting pneumonia with the cancer drug that had kept him stable over the last couple of years and had to go off of it. His doctor had heard Opdivo recommended for his type of cancer, and he was approved by BMS for full coverage since our insurance didn't pay for it. He started it in March with a dose every two weeks. His energy level plummeted. After 3 doses over 6 weeks, he decided to stop, but his energy kept declining and his tumors had grown. Also, his cancer markers were rising rapidly from about February till he was put on hospice in May. He passed away in June. I'm not saying Opdivo killed him, the cancer did, but the start of his rapid decline coincided with the start of Opdivo."

• Foo...
• Taken for 1 to 2 years
• November 15, 2021

Nivolumab for Melanoma "Boyfriend diagnosed with 3C metastatic melanoma in 2017. Surgery (WLE) to remove tumor in upper arm and several lymph nodes removed. One year of monthly Opdivo infusions following surgery. Hasn’t been the same since. Multiple infections and syndromes (C-diff, diverticulitis, SIADH...) one thing after another. He has lost a ton of weight and is pretty much bedridden 20 hrs per day. In his case, I truly question whether the benefits outweigh the risks. After watching his decline, I would have serious reservations. No quality of life at 64 years old."

• Mis...
• Taken for 1 to 6 months
• November 25, 2016

For Renal Cell Carcinoma "Yesterday, we celebrated my daughter's birthday and Thanksgiving without my husband, who passed away in June. He was diagnosed with neuroendocrine carcinoid tumors in 2010 and survived a wonderful six years. He did very well with Afinitor until it began to give him pneumonia. In March this year, his doctor started him on Opdivo. His energy immediately plummeted. In early March, he felt well enough to plan a vacation to Alaska for early June. By early April, he wanted to cancel it. He had three injections of Opdivo over March and April. He went into hospice in May and passed away in June. I'm not saying Opdivo killed him since his cancer markers were starting to rise before starting it, but they skyrocketed after starting it."

• Anonymous
• Taken for 1 to 6 months
• January 18, 2022

Nivolumab for Colorectal Cancer "My brother was in the clinical trials. His tumor had gotten bigger after Opdivo treatments, so he was dropped from the clinical trials. Months later, my brother's tumors 'appeared' to have shrunk, so he was immediately put back into the trials, so his data could be counted."

• JJa...
• Taken for less than 1 month
• April 21, 2018

For Non Small Cell Lung Cancer "My beloved mother is no longer with my family or me. Such an incredible shock this is. In my honest opinion, it wasn't because of the cancer itself, but from the allergic response and adverse effects of this drug, which hastened her death unquestionably (severe motor dysfunction and hydrocephalus). I wish I did my homework on her new 'treatment' before it was too late. If I could tell anyone about my story, it would be this: do your research on cancer medications (antineoplastics) because sometimes the risks outweigh the potential benefits. Immunotherapy drugs, e.g., Keytruda, Opdivo, should be used with EXTREME caution in patients with a previous or current autoimmune disease and those who show signs of generalized weakness before starting treatment. Thanks for taking my mom sooner than she needed to go, Opdivo."

• MHT...
• Taken for 2 to 5 years
• July 1, 2024

Nivolumab for Renal Cell Carcinoma "Diagnosed ccRCC Stage IV. Started Opdivo in July 2020 as second-line treatment; Sutent failed after 14 months. My Nov 2020 scan showed no evidence of disease! Even in areas that Sutent never was able to fully suppress! Clean scans for almost 4 years now. Zero side effects."