HI All- My husband, John, has Stage IV melanoma with mets in his lungs, lymph nodes and brain. He was on Zelboraf for 7wks but had to stop due to significant liver toxicity. While waiting for his liver to recover (~2wks), his brain mets re-grew (they had shrunk considerably after just 3wks) to as big or bigger than the original size. As a result, we chose to start WBR immediately and are hoping to add in Ipi at the end of this week. (Sadly, SRS is not an option right now as the number of mets are "too many to count", although they are reasonably small.) Has anyone else been through this combination? If so, at what point did you add Ipi and how did you control the swelling? John is on 5mg of prednisone as he has minimal swelling, but woke up this morning with a terrible headache. The radiologist wants him to increase his steroids to control swelling but the oncologist wants him to taper off the steroids to maximize the ipi effect. For today, he settled for oxycodone which seemed to control the pain, but I suspect the swelling will only continue, particularly if the treatment works. I'm trying to avoid increasing the steroid level because we will have to delay the Ipi another week, but I also can't stand seeing him in such pain. Any advice??
Also, if anyone has some positive stories with WBR and/or ipi on brain mets, I could really use a happy story to alleviate this nightmare we are living.