Nivolumab User Reviews & Ratings (Page 4)

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

Opdivo (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."

• 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."

• Jenkins
• Taken for less than 1 month
• July 11, 2018

Opdivo (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 back of throat. Was hoping to get a voice prothesis 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."

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

For Esophageal Carcinoma "I have Hashimotos Thyroiditis. My body didn’t tolerate the treatment. I had one infusion about 8 weeks ago. The side effects have came in stages. First was the fatigues I wasn’t at a dr 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 some what but I have now developed neuropathy. The nerve that seems to be affected is the funny bone nerve in both arms. When laying 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."

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

For Melanoma, Metastatic "I joined drug trial CA209-066 in June 2013 (in Australia). I was randomized to Nivolumab. 9 weeks after my first dose there was a 30% to 50% reduction in the size of my tumors. 16 weeks after my first dose I was diagnosed with Uveitis (an auto-immune inflammation of the eye). 13 months after my first dose the trial was "unblinded". 21 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."

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

Opdivo (nivolumab) for Renal Cell Carcinoma "I took 4 treatments of opdivo yervoy and I have horrible joint pain in my knees, hands, shoulders . It's been a month since last treatment and still severe pain. I wouldn't recommend it to any one. Dr. Keeps telling me it will go away. Pain medications don't work!!"

• His...
• Taken for less than 1 month
• September 23, 2021

Opdivo (nivolumab) for Non Small Cell Lung Cancer "Opdivo is a JOKE ! My husband had a heart attack the day of his second treatment and died the following week because he could not undergo surgery due to being so weak. We were not aware of some of the side effects. After his death I owed more to the cancer center than the hospital due to the fact that this immunotherapy drug cost $16,000 per treatment even though medicare and the supplement helped pay. The ONLY ones who benefit from these drugs are the drug makers. I honestly do not know a single cancer patient that immunotherapy has saved."

• 77Shaka
• 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."

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

Opdivo (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 start of Opdivo and during treatment. The tumor in my mouth started shrinking after 10 days from start of treatment. After 25 doses (4wk 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 where rash on face for a week every three weeks out from my dose. Natural immune boosters, Chaga tea, Astragalus, and Boswellia serrata."

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

For Melanoma, Metastatic "Combo with Ipilipumab - 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 be very ill with an inflammed digestive system, lots of vommitting and diahrea, 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 if not for the invenstors - Honjo and Allison."

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

Opdivo (nivolumab) for Malignant Pleural Mesothelioma "I have Peritoneal mesothelioma. This drug, along with Yervoy, gave me colitis & caused me to be adrenal insufficient. The treatment was worse than the cancer. I’ve had 3 infusions 9 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 & 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 & diarrhea & 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 & infection in my esophagus & small & large intestines after an endoscopy & 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."

• Kyria...
• 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."

• jkruger
• 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."

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

Opdivo (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. Iwas doing fine but it triggered my lichen planus back wondering if anyone out there ever heard of this or had it also."

• 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."

• Terry...
• 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 Hemaglobin 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 Terry Burlington, ontario"

• PRose
• Taken for 2 to 5 years
• October 31, 2022

Opdivo (nivolumab) for Non Small Cell Lung Cancer "I've been on Opdivo, 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 Sept. 2018. I go every other Friday. My side effects where/are, joints ache, with swollenness. Get tired and feel fatigued at times. Had some weight gain also."

• My da...
• Taken for less than 1 month
• September 15, 2021

Opdivo (nivolumab) "My daughter was in treatment for wilm’s tumor. She was in treatment for over 3 years. She received chemo, surgery, radiation, proton therapy, more radiation, & a stem cell transplant. She was okay for 8 months post transplant until the cancer returned to her lungs. We revisited drugs that she had not had since the beginning of her treatment. When all options were exhausted her oncologist decided to try opdivo. My daughter was already having trouble breathing but after the first treatment her breathing worsened. 3 weeks later she had her second dose -the date was Dec 18th. Her breathing worsened even more to the point where she couldn’t walk. She had to be wheeled into the ER on Christmas night 2019. A CT determined there were many tumors in both lungs -too many to count. We were told there was nothing they could do. My beautiful daughter lost her battle on Jan. 12th 2020. 15 days after her 15th birthday."

• Sherry
• Taken for 1 to 6 months
• July 26, 2021

Opdivo (nivolumab) for Colorectal Cancer "Was out of remission and had to take radiation and Opdivo . The cancer was resolved by the radiation treatment not the Opdivo. What the Opdivo did was damaged not only my thyroid but my salivary glands as well and caused blisters in my mouth."

• Chrys
• 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."

• Stack...
• Taken for 1 to 6 months
• September 17, 2022

For Malignant Pleural Mesothelioma "Worst medicine ever. My Mother who is only 74 years old was diagnosed with mesothelioma and was put on a combination of Optivo and Yervoy. After 6 long treatments which were awful with the side effects, the tumors actually GREW. These medicines did nothing for her plural mesothelioma, actually made things a lot worse. These are really expensive drugs and I can't believe the FDA approved them for mesothelioma. They did nothing for my Mother except make her even more ill and the tumors grow even faster."

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

Opdivo (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."

• RCCI
• Taken for 2 to 5 years
• February 20, 2024

For Renal Cell Carcinoma "At first in combination with ipilimumab. It eliminated RCC that spread, and was inoperable in both lungs as well as a tumor on a psoas muscle. Once the Yervoy was eliminated, my itching was much improved. My Thyroid needs pills now and the itching has come back somewhat but that's a good trade-off for 1.5+ years of cancer not found. I also have to pay more attention to my diet and constipation risk. I got bronchitis after a lung biopsy but that may just be coincidence. Tinnitus that has been around for at least two years but has gotten much worse in the last three months, but I have not brought it up to the doctor yet, but I will remember to now, since it is ever-present. I had been getting infusions every four weeks but with more itching, I have started an every eight weeks interval since cancer is at bay."

• Bucks...
• Taken for 1 to 6 months
• July 24, 2023

Opdivo (nivolumab) for Head and Neck Cancer "Well, it seems to work. I had squamous cell cancer in my left sinus, and after three treatments, the cancer is resolved, apparently. The side effects are brutal, though - diarrhea, constipation, weight loss, skin issues, sleep issues, and fatigue. Don't know how long they're going to go on."