Lung Cancer Support
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Nivolumab - what to expect?

So my mum is due to start Nivolumab this Wednesday! Her oncologist thinks this is the best way forward as her most recent scan showed some slight growth in her mediastinal lymph nodes and Adrenal glands after 2 rounds of Carboplatin. The good news is that the scan did not show any new areas of the cancer spreading.

We are still hopeful that Nivolumab could work for her and are interested to hear of anyone's experience with this drug....

Thanks in advance x

2 Replies

I highly recommend you join the Lung Cancer Support Group on and then reference these two posts - both are full of a ton of support and information from patient's who have been or are still on Nivolumab.

I am a Stage IV NSCLC patient (Adeno) diagnosed in March 2015 and was on Opdivo from December - August of 2016 - it worked very well for me and I am currently "Stable" and have been "off treatment" for over a year now. However, there are many potential side effects, which you'll learn about in those two threads or you can also find data on Bristol Myers website - at this link. - I was also provided a great deal of data when I had my first infusion, so I'm sure your Mum's Oncolgoist will have more to share with you once she begins her treatment. As with all meds, we are all different and have different responses to each treatment. Prior to Nivo, I had been on Chemo (Carbo and Alimta and then Alimta Maintenance, I then had progression and we switched to Opdivo.

I developed "low grade" Pneumonitis (a known side effect), and that's why I ultimately had to stop using Nivo, nonetheless it worked amazingly well for the short time that I was on it (16 Infusions) despite the side effects. I also experienced fatigue., some GI issues, nausea, aches and pains, but they varied in length and and time. Fortunately, I never had any issues or symptoms of the Pneumonitis, which can be on of the more serious side effects. Mine was minimal (asymptomatic) and found on routine CT Scans. Overall, for many t's easier than Chemo and many patients do well. I did not have any side effects for the first few months and had positive results from the very beginning. I do hope that some day (if I have any progression) that it will be a option for me to go back on Opdivo.

I hope it will work very well for your Mum and hope you'll find this information useful.

Best wishes,


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Thank you Lisa

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