Hello All,
I just wanted to express my gratitude for this board and post an update on my dad (I posted once before). He just made the 2 year anniversay of beginning treatment (ipi/nivo combo). He is stage IV and had numerous body (pancreas, lung, muscular, subcutaneous) and brain mets. The brain mets were treated with cyberknyfe with the exception of one lesion which was not treated and instead left to be watched for his study which was assessing if the combo has efficasy in the brain (stressful). In his case so far so good! He did suffer from pituitary dysfunction which renders him unable to produce cortisol but we will take that over the alternative any day! There is also some radiation necrosis as some of the lesions were on the larger side. The lung has remained mostly stable, the remainder of his body lesions have disappeared and the brain lesions have shrunk but remained visible.
So this brings me to the question what to do next? He was just informed that his trial has ended as it has reached the two year mark. He can either stop treatment and see if there is regrowth, have a PET scan to see if there is active cancer (but since you cant PET scan a brain we wouldn't know for sure if the spots in the brain are dead tissue or cancer), or attempt to receive nivo monthly through insurance. Since he is not "NED" I am concerned about him abandoning treatment. Has anyone experienced a similar experience?
I know no one can answer what to do for us, but I wanted to reach out to everyone and give hope to those who are stage IV with multiple brain mets. We are so happy to have my father here two years later and in good health.
Thank you!
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