Nivolumab and Diarrhea: What Users Say

• Ric...
• Taken for 1 to 6 months
• November 23, 2016

Nivolumab for Non Small Cell Lung Cancer "My mom started on radiation and chemo, traditional chemo did not work because the cancer had spread to her bone marrow. Her doctor started her on Opdivo, and she went downhill from there. She had pneumonia and joint pain, diarrhea, etc. The side effects were worse than the cancer. I would not recommend this drug to anyone. Taking this drug was a HUGE setback for my mom, she passed away yesterday, 11/21/16. Please do your homework before taking it."

• ilo...
• January 9, 2018

Nivolumab for Colorectal Cancer "I have small intestine cancer/stage 4. I have been on Opdivo for 1 full year because I could not tolerate chemo anymore. It took 9 months for pain relief, and 4 months ago, my CT scan showed that my tumors have shrunk 30 percent. Opdivo has saved my life! I have only diarrhea as a side effect. I am so grateful that my doctor put me on this as I would not be alive. I have gained 20 lbs and don't feel as if I have cancer. I can't wait to get my next CT scan."

• Rob...
• Taken for 2 to 5 years
• September 27, 2021

Nivolumab for Colorectal Cancer "I have been dealing with abdominal tumor growth for 15 years. I started Opdivo three years ago after two scans that showed tumor growth. It kept my tumors from growing for 2.5 years. I had almost no side effects. Just occasional loose stools and occasional rashes that were not itchy and went away in a few days. I started taking it every 2 weeks and then moved to once a month. I was in and out of labs and infusion in 1.5 hours, so I never needed to miss work."

• 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."

• 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."

• 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."

• 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."

• 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."

• 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."

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

Nivolumab for Renal Cell Carcinoma "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."