Nivolumab for Melanoma User Reviews

• Old...
• Taken for 6 months to 1 year
• October 17, 2019

Nivolumab "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."

• Amo...
• October 17, 2018

Nivolumab "My sister (age 35) was diagnosed with melanoma in April 2018. The cancer had spread to her lymph nodes but was confirmed to have not spread to any organs. In May 2018, after the 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 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 treatment, 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."

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

Nivolumab "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."

• Mom...
• Taken for 6 months to 1 year
• December 10, 2015

"My mother received this treatment as part of a clinical trial for advanced stage 4 melanoma. She was given 9 months to live. As a reality of taking this 'miracle' drug for melanoma, she ended up with adrenal failure and advanced diabetes. She died within 7 months. This is not a cure or a means of 'living longer.' Drug companies need to stop feeding on the time patients have left and leave them be. Honestly... do you want to sit with your loved one during their last days and talk and laugh and enjoy your time? Or watch them receive a multitude of medications in a coma state and die?"

• Pau...
• Taken for 1 to 6 months
• June 19, 2018

Nivolumab "Everything was going well on the 2-week treatment for 8 weeks, then the doctor tried to do a monthly dose, and my sugar skyrocketed to almost 500. I was hospitalized and had to start insulin shots! Still on shots for about a week, hoping things get back to normal after the Opdivo is out of my system, just not sure how long that will take."

• Rob...
• Taken for 1 to 6 months
• December 11, 2018

"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."

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

Nivolumab "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."

• NoC...
• Taken for 1 to 2 years
• May 17, 2019

"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."

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

Nivolumab "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."

• Man...
• Taken for 1 to 6 months
• November 13, 2022

"I had stage 3 melanoma. 15 years earlier, I had a malignant melanoma mole removed from my lower back. Then it came back in my lymph nodes in my groin. Surgery removed 13 lymph nodes. They recommended nivolumab as adjuvant treatment. First treatment, I developed a mild cough. I let them know, but they were hyper-focused on Covid, so they said it may be that. I did two more treatments, and the cough got really bad. Pneumonitis was diagnosed. They took me off of nivolumab and put me on prednisone, an antibiotic, and a stomach pill to turn off my immune system. I had such a bad reaction to the antibiotic that I ended up in emergency. I never felt so sick and utterly exhausted. I regret all the pharmaceuticals they gave me. I wish I had just stopped with the surgery."

• Bur...
• Taken for 2 to 5 years
• July 26, 2022

Nivolumab "To put my experience with Opdivo in perspective. I was stage 4 melanoma, had radical dissection on my left neck, removed 29 lymph nodes. I was then given Opdivo for 8 months. First PET scan showed no recurrence. Was to get 12 doses, only took 8. At this time, the side effects of good organs being attacked started-my lungs and my heart. Prednisone is used or was used by my doctor to back the immuno down. This steroid has its own side effects but did what it was supposed to do. This was all in the first year of using Opdivo. It's been four years since it all started, I have had no recurrence at this time."

• The...
• Taken for 1 to 6 months
• October 13, 2022

Nivolumab "My husband was diagnosed with stage III melanoma and had a softball-sized tumor removed 11/11/21. His first Opdivo treatment was at the end of December. He had some reactions to the medication - the second and final treatment was at the end of January. Ever since the first treatment, he has had mouth blisters/ulcers. He got 'black tongue.' Had double vision issues. Still has fluttering heart. He is suffering from severe arthritic pain. If we had realized the potential long-term effects, we wouldn't have started treatment. My husband has always been a healthy, active, hard-working kind of guy. He has been on various doses of prednisone ever since. (Adrenal insufficiency at this point, as well.) This drug has destroyed his quality of life. Please do your research. This drug was basically fast-tracked for approval. In addition, at $37,000 a pop for treatment...makes you wonder who has the patient's best interest at heart."

• Wha...
• Taken for 1 to 2 years
• March 14, 2025

Nivolumab "I have had great success with Opdivo for the first 14 months. I was in remission after 9 months. I have had very few side effects. Diarrhea was the most common, nothing Imodium AD wouldn't take care of. My most recent side effect is joint pain in ankles and wrists. No one can tell me if this is temporary while using the Opdivo or if it will be permanent."

• Mar...
• February 26, 2025

Nivolumab "My eyes have changed. I have developed macular degeneration. Because my left eye was wet, I have been getting eye injections. My vision is changing constantly. Would this be part of my Opdivo treatment? I also need cataracts removed. Would my Opdivo treatment affect this?"

• Wal...
• Taken for 6 months to 1 year
• January 11, 2025

Nivolumab "I was diagnosed with stage 4 melanoma that had metastasized to my left lung. I had real good success with this treatment. Had a couple side effects, but nothing serious. I received treatments for 10 months and I was in remission. Just starting to see some more side effects: swollen ankles, wrist joints, and itching. Other than that, I am happy with the results."

• Ros...
• Taken for 1 to 6 months
• November 19, 2017

Nivolumab "My husband has had wonderful success with this medicine, it never made him sick the whole time he has been taking it. He is presently still on it for maintenance."

• Joe...
• August 11, 2024

Nivolumab "Seems to be working. I haven’t needed any of the nausea meds they gave me. Caused increased appetite with weight gain."

• Mik...
• Taken for 6 months to 1 year
• January 31, 2024

"Melanoma in my lymph nodes in the left armpit. I had 29 lymph nodes removed and received 12 months of nivolumab infusions. So far, I have been cancer-free for two years."