Hi everyone

I've been on nivolumab for two years, Simon Scoo33 . There's a few others in this group on it, or had it too.  Then plenty more in other groups.  

2 years how do you find it do you have any side effects 

Sorry you are feeling this way, Scoo33. I also struggle to sleep and the night are too long. Terminal- did they the professionals- say this? I was told I'm incurable but treatable. Probably the same thing. Its a lonely feeling and I wish you sleep and lots of positive thoughts.

Scoo33 said:

2 years how do you find it do you have any side effects 

My side effects have all been related to immune system imbalances.  I now have impaired kidney function, in the range of GFR between 50 - 57.  Normal for my age is way above 60.  This range is typically akin to my 90 year old Dad's GFR.  But I don't feel ill effects from it.  Then I've had dry eyes, dry mouth, itchiness caused by the immune system attacking itself, 

I stop in June with the full support of my team!  I'm calling it a day because (a) I reckon I've had all the benefits now and (b) got to stop before I get an impactful or horrible immune response!  Once you get one there's an increased likelihood of more.  

Hi Popgate great  news so pleased for you. Long may you continue to be STABLY wow. Xx

Moi