Success with nivolumab – should we continue?

My husband, Pete, now 61, was diagnosed with Stage IV malignant melanoma in February 2017. He had a huge lymph node removed from his right neck region along with 33 other nodes which were clean. This surgery took place at MD Anderson in Houston. In July of that year, after recovering from surgery, a PET scan revealed a lot of growth: Spine and brain mets, mets to hip bones. He underwent some local radiation to the neck and then targeted radiation to the brain mets at the base of his skull. He then started on Yervon/nivolumab and progressed to just nivolumab. He tolerated his immunosuppression fairly well. Main side effects have included itching, fatigue, a “foggy brain” and some sporadic morning nausea but so far his PET scans have revealed no progression. Doc doesn’t know how he walks with the spine in the shape it is and recommends lifting “nothing heavier than a jug of milk” He is stubborn, however, and continues to “work out” daily (although not to the extent that he did before all this). I know this has really helped with his physical and emotional strength. Bottom line, he is coming close to the two-year mark of immunosupression. A success story for sure! He We are very thankful to have come to this point. Soon will be the two-year mark and he will make a decision to continue or stop the therapy. There doesn’t seem to be clear-cut evidence one way or other, although the oncologist recommends continuation..

This month the insurance denied doctor’s request for a PET scan on the basis that the brain MRI and past PET scans have not changed.. Doc is recommending a bone scan/CT instead but this will very different than the PET scan so he wanted to go over the interpretation with us after it is done.

Just wanted to get his experience out there to give others hope who are immunosupression – we do certainly believe it saved his life! (oh, and PRAYERS)

Sabrina