Nivolumab for Renal Cell Carcinoma User Reviews

• Bra...
• Taken for 2 to 5 years
• September 19, 2019

Nivolumab "Saved my life. Been on Opdivo (Nivolumab) for 3.5 years after being told I was about to die. All my tumors have shrunk, if not disappeared altogether. No side effects! CT scans are clear. No cancer symptoms. Doctor says I could live a normal lifespan. Treatment consists of a monthly half-hour IV drip."

• Ray...
• Taken for 1 to 2 years
• July 17, 2019

Nivolumab "I was on the drug for almost 2 years. It worked for my bone metastasis, and it shrank my tumor in the right kidney. Stage IV RCC, I was able to stop and have been stable over a year now without medication. Hoping it will continue to work for a while."

• Des...
• Taken for 1 to 6 months
• April 14, 2017

"I've had 7 two-weekly infusions, and so far I've had no side effects, none! After 6 infusions, I was scanned, and I was told it was working really well. My kidney cancer in my chest lymph glands has shrunk, and the kidney cancer that has spread to my lungs has also shrunk! Nivolumab is my second line of attack, the first being Pazopanib. I only got 4-5 months out of Pazopanib, but I had quite a lot of side effects with it. So taking nivolumab and having no side effects is a real godsend. I haven't felt this good in 4 years, I feel stronger, and I'm putting the weight back on I lost taking Pazopanib. Hair has returned to normal color. I hope this lasts a long time for me, and I hope this post helps in some way. Good luck and God bless all."

• Cha...
• Taken for 6 months to 1 year
• February 18, 2023

Nivolumab "December 25, 2021, diagnosed with stage four clear cell renal cell carcinoma that had gone to my lungs (non-small cell lung cancer). Softball-sized tumor on my right kidney and numerous ping pong ball-sized tumors in both lungs. No outward signs that I was ill. January 19, 2022, received my first infusion. Combo Opdivo with Yervoy by infusion. Two weeks into the first infusion, I developed a facial tumor that tested out to be clear cell renal cancer in origin. Doctors wanted to start me on Cabometyx, but I declined. One week later, just prior to my second infusion, that tumor had vanished and was only a small subdermal bump (subsequently, all evidence of that tumor was gone). I just received my 15th infusion today (4 combo Opdivo/Yervoy at 3-week intervals and now my 11th Opdivo 480 mgs once a month). My tumors, both in my lungs and on my kidney, have shrunk by 60%, and I’ve had almost no side effects (slight fatigue, minor itching, some muscle/bone pain). It’s working for me."

• GCP...
• Taken for 1 to 6 months
• February 3, 2020

Nivolumab "Opdivo was the end for my husband!!! The doctors had been pushing this drug at us for 2 years. My husband finally decided to try it, and 7 weeks after his first infusion, he passed away due to complications from the medication!!! It caused pseudo-diabetic symptoms, respiratory failure, and numerous other complications!!! I would not recommend this treatment for anyone!!! I feel that they faked their trial runs to get funding for their experimental treatment!"

• For...
• Taken for 1 to 6 months
• November 24, 2021

Nivolumab "Daddy was on this for about 6 months. Would have been longer if his cancer didn't spread to his brain. This does not cross the blood-brain barrier. This was the best medicine he ever took. Took in combination with Yervoy. Daddy had clear cell RCC. It was in his stomach, liver, lung, and right atrium (heart) at the time. This medicine got rid of the cancer in his stomach, atrium, and lungs. I highly recommend this medicine. Daddy was still working as an automotive mechanic while taking this medicine. Side effects were minimal. The only thing is his immune system seemed to be more weak. That was it. He also had no kidneys left from the cancer. So he was on dialysis. I wish he could have stayed on this."

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

Nivolumab "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."

• Vic...
• Taken for 1 to 6 months
• December 20, 2019

"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

"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."

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

"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."

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

Nivolumab "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."

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

Nivolumab "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!!"

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

"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."

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

Nivolumab "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."

• Cha...
• Taken for 1 to 2 years
• February 4, 2025

Nivolumab "Received my 28th and last Opdivo infusion 11 months ago. I opted for going past the recommended 24 months of treatment. It’s hard to stop treatment when the treatment has saved your life and with very few side effects. It’s 12 months since being given a remission diagnosis, and all the intervening CT scans have indicated my tumors are not changing or metabolizing. Opdivo was my magic bullet and remains a viable option to look at when researching a treatment protocol for your cancer treatment."

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

"I have only had 3 cycles so far. Side effects quite minimal, having been on Cabozantinib for 3 years. The side effects are much the same: fatigue, upset tummy sometimes. The only new side effect is insomnia, for which I have been prescribed 5 days of sleeping tablets to try to reset my sleep pattern. I have had a couple of ulcers on my legs but not sure if this is Nivo related, as the first one was while I was still on Cabo. 3 monthly CT scan due in 6 weeks, so effectiveness unknown at the moment. Not covered on insurance as it is prescribed on the amazing NHS. On the whole, if it does what it is supposed to do, then the above is all worthwhile."

• RCC...
• Taken for 2 to 5 years
• February 20, 2024

"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."

• S3a...
• January 27, 2017

Nivolumab "I was on Opdivo for 6 months. It really set me back, I had to quit it before it killed me."

• Kim...
• Taken for 1 to 2 years
• January 29, 2023

Nivolumab "Renal metastatic cancer in back and lungs also worked terrific, going on 6 years cancer-free."

• Bob...
• Taken for 2 to 5 years
• June 27, 2023

Nivolumab "Drug is being administered by infusion every 28 days for about two years. No sign of cancer for many months in my CT scans."

• Fai...
• Taken for 1 to 6 months
• April 4, 2019

Nivolumab "I was on Opdivo for 4 months for stage 4 RCC. Felt good, diarrhea was the only side effect until I got blurry vision in one eye. During those 4 months, I had no increase in the size of the tumors."

• sdw...
• Taken for less than 1 month
• February 26, 2024

Nivolumab "So far, so good. I have only had one infusion and no side effects. A couple more months and I will have a PET scan. Will know more then. I also have psoriasis so some immunology difficulties."

• Ben...
• April 2, 2017

"47 months on treatment in the Phase I-b clinical trial. Started Nov 2011, finished trial Oct 2015."