Hi there! I managed to get on the nivolumab trial as a teenager. I was on it for 3 years and started at the age of 15. I thankfully got off of it around the time covid started kicking off. I come to this forum years later however because I'm starting to realize that certain issues in my personal life haven't been making much sense. While on treatment, I was only on nivolumab. I remember being very tired and groggy. Brainfog was something that really messed up my academics and attendance. My immune system was pretty shot shot as well. My main issue was not feeling hunger at all, which caused me to lose a lot of weight. I was very grateful that this immunotherapy did not cause as many side effects as traditional chemo. In the present I'm starting to realize that cognitively, I'm not the same as I was pre- Nivolumab. I have still have brainfog, the novolumab gave me a gluten allergy, I can't Focus, I cant hold conversations, memory goes right out the window, and my Immune system has not been great either. It will soon be 4 years post treatment, and my cognitive state has just slightly gotten better. The cognitive issues have created issues in my work and relationships. And whenever I ask my doctors and Oncologist, I feel like I get brushed to the side. I haven't found much articles about the after effects of this medication, so I do feel neglected in that case. Result wise, my lung cancer shrank, but did not go away. I've been stable ever since, no growth or spread. I've only spoken to one other person on this treatment, and they have been reporting similar side effects as well. I hope the treatment does you wonders!

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