Nivolumab and Fatigue: What Users Say

• hes...
• July 31, 2019

Nivolumab for Non Small Cell Lung Cancer "I had NSCLC. I found out about April of 2018. The hospital I was going to tried radiation and chemo. The cancer had moved to the lymph nodes in my neck. The radiation shrank it some, but it came roaring back. My oncologist started me on Opdivo about October of 2018, and it has been smooth sailing so far. Here it is July 31, 2019, and I look forward to maybe only one or two more treatments. My last two PET scans have been good. There is no doubt in my mind that I am alive because of this treatment. I have had some shortness of breath, quite a lot of fatigue, a rash or two, some itching... Nothing unbearable, just uncomfortable. I am grateful for this technology. Having said that, I quite understand that people who have had negative experiences might even hate it, but how could I not give myself this chance?"

• fLB...
• September 16, 2020

Nivolumab for Urothelial Carcinoma "My dad was diagnosed with SCCB, underwent chemo. After that, cystectomy with neobladder from parts of his intestine. The surgeon at MSKCC is top in the nation. Months later, a CT with biopsy showed metastasis in his lung, did fine with the Ipi/Nivo combo, but when switched to Opdivo alone, he has been having more issues than when he was first diagnosed. Fatigue, low BP (80/50), anorexia, insomnia, anxiety, depression, mood swings, vision problems, eosinophilia, anemia, and the list goes on. After reading the reviews on this medication, I’m trying to make sure he is not given it again. It has led to more specialist visits for him than ever. Everyone needs to discuss quality of life versus quantity with their loved ones, prior to starting these meds. If one is constantly in pain, unable to eat, sleep, think straight, is constantly exhausted and fatigued, etc., is that really even living? It’s heartbreaking, to say the least. It may work for some, but for others, it has done the opposite."

• KJa...
• Taken for 1 to 6 months
• May 6, 2018

Nivolumab for Non Small Cell Lung Cancer "My husband was given Opdivo for stage IV non-small cell lung cancer. Three days after his third treatment, he became seriously ill (short of breath, fatigue, increased oxygen requirements) and was hospitalized. His oxygen needs increased from a baseline of 5L to 13L upon admission. Three days later, his oxygen needs increased to 30L, and he passed away 10 days after his third treatment. I believe that Opdivo contributed to his death at age 57. Looking back, he should never have started this medication."

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

Nivolumab for Renal Cell Carcinoma "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."

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

Nivolumab for Melanoma, Metastatic "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."

• ein...
• Taken for 1 to 6 months
• September 15, 2015

For Non Small Cell Lung Cancer "Been on Nivolumab since July 31, every 2 weeks. As of Sept. 14, I've lost about 10 lbs, have loss of appetite, cough, and fatigue. I will be starting acupuncture today (9/15) and believe this will help me. I went through 6 weeks (every day) of radiation and chemo last year and started acupuncture at the very beginning of treatments and never had any side effects except loss of hair, and I walked 2 miles every day while undergoing treatments. I'm very encouraged and believing that Nivolumab will eliminate my cancer. I can't compare the side effects of my treatments last year with Nivolumab because of the timely manner of acupuncture."

• Pad...
• Taken for 1 to 2 years
• September 26, 2019

For Head and Neck Cancer "Nivolumab has provided hope. With no more surgeries or radiation, this drug has stabilized my reoccurred tumor in my neck. Aside from some itchiness, fatigue, achy muscles, and joints, I tolerate the regimen. 18 months later, after being told not much can be done, I'm fortunate to respond. Grateful!"

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

For Melanoma "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."

• 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."

• 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."

• 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."

• 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."

• Sta...
• 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 Opdivo and Yervoy. After 6 long treatments, which were awful with the side effects, the tumors actually grew. These medicines did nothing for her pleural 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."

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

For Renal Cell Carcinoma "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."

• Ric...
• March 9, 2023

Nivolumab for Colorectal Cancer "Cancer has decreased from 26 mm to 8 mm. Experienced diarrhea daily, need to drink lots of water, occasional dizziness, trouble focusing on written words on the computer, fatigue."

• Ist...
• Taken for 1 to 6 months
• April 1, 2025

For Hodgkin's Lymphoma "Nivo AVD over 6 months of infusions resulted in a clear PET scan. Side effects were extreme fatigue and some gastrointestinal distress."