Nivolumab for Melanoma, Metastatic User Reviews

• WAn...
• July 10, 2019

Nivolumab "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 it 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 godsend to me."

• Cab...
• November 18, 2017

Nivolumab "Surgery to remove polyp. Follow-up surgery to remove nasal and sinus mucosal melanoma. Proton beaming to clean up remaining mm in nose/sinus. Metastasis in bones, brain, liver, kidney, gallbladder, and spleen. Opdivo started, and after 6 infusions, observed reduction in size of tumors everywhere. Continue another 6 infusions until next scan."

• scr...
• Taken for 1 to 2 years
• April 8, 2023

Nivolumab "I had a large lymph node that was melanoma, and also a lesion in my lung. After 5 treatments of Opdivo alone, I have no evidence of disease (NED). I have remained NED for 3 years and counting. The only side effects were fatigue and a non-itchy skin rash. Had 24 treatments, ended 18 months ago."

• jma...
• Taken for 1 to 2 years
• February 8, 2021

Nivolumab "I had stage 4 melanoma in my lymph glands, lung, liver, and bladder. After one year on Opdivo, 98% of the cancer was gone. I stayed on Opdivo for another year, and my last scans showed no C-cells. Currently, I'm off Opdivo until my next scans are done. Yes, it did save my life. And yes, there are side effects, but they outweigh the other."

• tay...
• Taken for 1 to 6 months
• May 17, 2022

Nivolumab "Devastating life-threatening side effects. Started mouth breakouts, muscle, joint, and tendons swollen to the point of needing a wheelchair. Started 80 mg steroids to stop destruction of joints. After a month on 80 mg, started reducing steroids, then pituitary gland swelled, crushing optical nerves in both eyes. Permanent vision loss with blindness in one eye. Vision went from 20/20 to 20/200 in the left and 20/40 right. Thyroid damage came next, followed by sugar levels monitoring to start insulin. This week, it seems to be starting in the lungs and heart. Rapid heartbeat with skipping, and 3-month follow-up CT scan now shows lung damage. I ask for quality of life over quantity and was told this was safe and steroids could control side effects. Consulting with other doctors, they say 15-20% survive metastatic melanoma, and they do not know if those treated with Opdivo and survive are the same ones that would survive without taking it. Destroyed my life and will lead to an earlier death."

• DaB...
• Taken for 6 months to 1 year
• March 18, 2024

Nivolumab "Received 12 months of Opdivo, 23 treatments from April 2018 to April 2019. Skin rash in splotches on hands, arms, stomach, and feet. Severe bone and muscle pain, weakness, and fatigue, stomach issues, loose bowels. All throughout treatment. I am now almost 5 years from the last treatment, but I continue to have bone and muscle pain, and from time to time I get rashes popping up randomly. My biggest complaint is that I continue to be tired and have bone/joint pain. All my treatments and blood work were in the right arm as I had lymph nodes taken from the left arm, so no blood pressure, no needle sticks, etc., in the left arm. Right arm held up well with all the treatments and blood work. Now my right shoulder and nerves down my arm bother me a lot. My final comment is, Opdivo worked. Thank God I am still here on this earth."

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

Nivolumab "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 "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."

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

Nivolumab "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."

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

Nivolumab "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 "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."

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

Nivolumab "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."

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

"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."

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

"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."

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

"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."

• Dou...
• Taken for 2 to 5 years
• November 15, 2024

Nivolumab "Stage 4 metastatic melanoma. Two years plus on Opdivo with very few side effects. Occasional headaches."

• Uit...
• Taken for 6 months to 1 year
• May 24, 2018

"Now, a year on this, with a decrease of 50% and a little more. Now, two final scans with good stabilization. Hopefully, this can still rescue me from cancer."