Nivolumab User Reviews & Ratings (Page 4)

• 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."

• CJL...
• Taken for 1 to 2 years
• January 22, 2021

Nivolumab for Head and Neck Cancer "When I was about to start Opdivo, I was told it was not a cure but a life extender. I prepared myself by taking natural immune boosters one month before the start of Opdivo and during treatment. The tumor in my mouth started shrinking after 10 days from the start of treatment. After 25 doses (4-week schedule) and two years, I stopped my treatment. The tumor was gone by the first year. Hospice was my option before Opdivo saved me. Side effects were a rash on my face for a week every three weeks out from my dose. Natural immune boosters, Chaga tea, Astragalus, and Boswellia serrata."

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

For Melanoma "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 for Melanoma "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 for Melanoma "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."

• Chr...
• Taken for 5 to 10 years
• March 2, 2024

For Non Small Cell Lung Cancer "I have had monthly injections of nivolumab since 2018 for stage 4 non-small cell lung cancer! That's 6 years which I wouldn't have had with chemotherapy. I had a full-body rash after the first dose that was treated with steroids. It did not recur. I feel well and owe my life to this drug. Full disclosure, I live in Canada and the government covers all my medical costs associated with taking this drug."

• WWD...
• Taken for less than 1 month
• March 3, 2022

For Esophageal Carcinoma "I have Hashimoto's Thyroiditis. My body didn’t tolerate the treatment. I had one infusion about 8 weeks ago. The side effects have come in stages. First was the fatigue. I wasn’t at a doctor appointment, I was trying to rest up. I also had liver pain. My enzymes tripled. The next phase was numbness in my midsection. Every muscle in my abdomen felt as if it were constantly being flexed. This lasted about 6 weeks. The side effects have lessened somewhat, but I have now developed neuropathy. The nerve that seems to be affected is the funny bone nerve in both arms. When lying down, it gets worse. While I try to sleep, the nerve gets activated. This is the same feeling as when you hit your funny bone, only it lasts a lot longer. The pain is a 10 out of 10. As I already have an autoimmunity, I wondered if this kind of thing might happen. I know people who are having fantastic results from similar treatments. This just wasn’t the right treatment for me."

• Pie...
• Taken for 1 to 6 months
• December 5, 2023

Nivolumab for Melanoma, Metastatic "Significant reduction in right lower pulmonary nodules and hepatocellular metastases after 4 injections. Side effects: Very high fever (required hospitalization) Pain in the abdomen, feeling of organs being inflamed Very high sensitivity of chest skin. The treatment is underway."

• Car...
• Taken for 5 to 10 years
• November 22, 2023

Nivolumab for Non Small Cell Lung Cancer "Nine years ago, I was told I had 6 to 9 months to live as I was diagnosed with metastatic lung cancer, which had spread to the bone, liver, and brain. I was on chemotherapy for the first year and then switched to Opdivo, which I have been treated with for the past 8 years. My current condition is described as stable, and Opdivo treatments were recently discontinued as it is believed that my own immune system is now attacking cancer growth. I consider Opdivo to be a miracle drug which, for me, had only mild and limited side effects, such as difficulty sleeping, headaches, etc."

• Mel...
• Taken for 1 to 6 months
• December 11, 2021

Nivolumab for Renal Cell Carcinoma "I took 4 treatments of Opdivo Yervoy, and I have horrible joint pain in my knees, hands, and shoulders. It's been a month since the last treatment, and still severe pain. I wouldn't recommend it to anyone. Dr. keeps telling me it will go away. Pain medications don't work!!"

• Jen...
• Taken for less than 1 month
• July 11, 2018

Nivolumab for Head and Neck Cancer "Just started Opdivo last week. Will have it every two weeks. Had to have a full laryngectomy seven months ago because of a tumor in the back of my throat. Was hoping to get a voice prosthesis to talk again, but they discovered two small cancerous tumors on my tongue. Surgery, of course, is not an option. Hoping Opdivo will shrink these tumors at the very least, if not destroy them altogether."

• IRS...
• Taken for 10 years or more
• June 15, 2023

For Melanoma, Metastatic "I joined the drug trial CA209-066 in June 2013 (in Australia). I was randomized to nivolumab. Nine weeks after my first dose, there was a 30% to 50% reduction in the size of my tumors. Sixteen weeks after my first dose, I was diagnosed with uveitis (an autoimmune inflammation of the eye). Thirteen months after my first dose, the trial was 'unblinded'. Twenty-one months after my first dose, a scan showed 'no evidence of metastatic disease'. I have been receiving nivolumab for 10 years and remain cancer-free. Side effects include uveitis and a skin rash."

• 77S...
• Taken for 1 to 6 months
• April 13, 2023

For Non Small Cell Lung Cancer "On January 17th, 2023, I began treatment for stage 3a NSCLC, which included infusions every two weeks. At 75 years old, I was diagnosed on April 6th, 2022, after discovering a 1.9mm nodule at the bottom of my left lung, along with malignant hilar lymph nodes. Initially, I did not undergo any therapy for 9 months, opting instead for CT/PET scans every three months. During this period, there was no growth in the nodule, and the SUV hypermetabolic activity remained at around 7.7. Following five infusions, my doctor performed a PET/CT scan, which revealed that the hilar lymph region was cancer-free, although the nodule had grown slightly. However, the SUV was low. My next step is to have a radiation oncologist map the location of the nodule and perform a direct radiation beam, known as radiation surgery, to eliminate the nodule. Fortunately, I have an outstanding doctor who has not overtreated me. Despite initial fatigue and headaches, the side effects of Opdivo, the treatment I'm receiving, disappeared after a couple of infusions. I am scheduled for my seventh infusion on April 17th. Throughout my illness, I have not experienced any symptoms and have remained very active, participating in activities like surfing, mountain biking, hiking, and walking."

• Lon...
• Taken for 6 months to 1 year
• November 21, 2022

Nivolumab for Malignant Pleural Mesothelioma "I have peritoneal mesothelioma. This drug, along with Yervoy, gave me colitis and caused me to be adrenal insufficient. The treatment was worse than the cancer. I’ve had 3 infusions of Opdivo, and the 1st and 3rd were combined with Yervoy. Each infusion gave me a worst case of colitis. The colitis required steroids to combat its symptoms of vomiting and diarrhea. Each of the 4 times my doctors tried to wean me off the steroids and stopped them, within 2 days I would end up in the hospital because of vomiting and diarrhea and dehydration. After the 3rd infusion, the steroids were ineffective in treating the colitis, I was in one hospital for almost a month while they kept giving me steroids thinking it was treating the colitis. When I went to a different hospital, one that specializes in cancer care, they immediately discovered that I had inflammation and infection in my esophagus and small and large intestines after an endoscopy and colonoscopy, proving that the steroids no longer were effective in treating the colitis."

• WCS...
• Taken for 1 to 6 months
• January 12, 2023

For Renal Cell Carcinoma "Stage 4 renal cell carcinoma, 1 kidney removed, it metastasized to my bones, both lungs, and lymph gland (terminal). It was given as 2nd line treatment, 5 days after infusion my liver shut down due to HEP C that I had, and I had blood clots in my lung. In hospital 23 days. Now, 4 years later, I tried again after HEP C treatment, I had 3 infusions in 3 months, caused bacterial pneumonia in both lungs. I would not recommend!! BUT it does work reducing tumor size and spread."

• Dav...
• Taken for 1 to 6 months
• April 8, 2023

For Melanoma, Metastatic "Combo with ipilimumab - created total remission of stage 4 melanoma including 2 big mets in my brain. Combo side effects are terrible and the protocol needs adjusting for early responders like me in which case 3 infusions is plenty. My 4th infusion made me very ill with an inflamed digestive system, lots of vomiting and diarrhea, but the scans showed the job was done after 3 infusions. Overall, it is a miracle treatment because I'd be dead or in palliative care if not for the investors - Honjo and Allison."

• Kyr...
• Taken for 1 to 6 months
• December 3, 2022

For Non Small Cell Lung Cancer "This drug caused the death of my father earlier. When he received this drug, he had advanced non-small lung cancer (squamous) with multiple bone metastases. After the second dose, my father could not walk, and after 20 days, he passed away in the hospital. Do not give this to your loved ones in advanced stages. There are no benefits."

• jkr...
• Taken for less than 1 month
• July 9, 2022

For Melanoma, Metastatic "After one dose of nivolumab (I was given a total of five doses), the drug simultaneously caused nerve and tissue damage in both hands. My hands have severe nerve damage and are very painful and are turning into 'skeleton hands' due to muscle or tissue loss. My shoulders and all other joints are now weakening and extremely painful. Nivolumab also has diminished my concentration and memory. This drug is not being tracked with its severe defects. My life has been shortened by its side effects."

• Joc...
• Taken for 6 months to 1 year
• April 29, 2018

Nivolumab for Non Small Cell Lung Cancer "I have stage 3B lung cancer and was on chemo but couldn't take it, so then I was on Opdivo. I was doing fine, but it triggered my lichen planus back, wondering if anyone out there ever heard of this or had it also."

• Jam...
• Taken for less than 1 month
• December 10, 2018

For Non Small Cell Lung Cancer "My husband had NSCLC in 2011, then in 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 doctors. He was to have his second Opdivo treatment, and on the very day, I woke to him seizing in our bed. After an ER trip, we found out he had blood clots all up one side of his head, and he died three days later."

• Ter...
• August 22, 2017

For Hodgkin's Lymphoma "I have both NHL and HL, have been on Opdivo since Feb 2017. I've had very little side effects, mostly a small rash. My hemoglobin went from 59 to 145. I feel great, and I'm preparing for a donor stem cell transplant in Sept 2017. I've had an autologous stem cell transplant and several different chemos."

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

Nivolumab for Melanoma "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."

• PRo...
• Taken for 2 to 5 years
• October 31, 2022

Nivolumab for Non Small Cell Lung Cancer "I've been on Opdivo for 4 years. I was diagnosed with Stage 3 lung cancer on Feb. 7, 2018. I had chemo once a week for about 3 months, but radiation 5 days a week at the same time. Then, a month and a half later, more radiation for about another 5 weeks. Started Opdivo treatments in Sept. 2018. I go every other Friday. My side effects were/are joints aching, with swelling. Get tired and feel fatigued at times. Had some weight gain also."

• Lyn...
• Taken for 1 to 6 months
• April 22, 2025

Nivolumab for Renal Cell Carcinoma "My kidney cancer had spread to my lungs with numerous cancerous nodules throughout both lungs. The nodules were growing slowly but finally had gotten to the size that caused concern. I started Opdivo with Yervoy 5 months ago and for the last 3 months just Opdivo. The nodules have begun to shrink, which we are very excited about. I, however, in the last couple of months have experienced a loss of the ability to taste. Some foods have a slight taste, but most have no taste at all. This has made cooking for my family a challenge. Also, I developed carpal tunnel with complete numbness in my thumb and forefinger on one hand. I just started feeling a little tingle in the forefinger of my other hand, which has me a little concerned."

• Jef...
• Taken for 2 to 5 years
• February 17, 2025

For Esophageal Carcinoma "Took IV nivolumab with 5-FU for near 2 years. Then got severe diarrhea for weeks till it was decided that I was rejecting the nivolumab. I was put on high dosage prednisone, and the diarrhea cleared. My oncologist has said I was no longer a candidate for any immunotherapies."