Hi folks,
Recent posts by Brian and Celeste inspired me to post a brief update. Folks know my history (or can review it via my prior posts starting in August 2013). My most recent treatment following a challenging 2015 was ipi/nivo starting in early 2016. I had 3 of 4 of the combined infusions and ~20 nivo infusions in 2016. Towards the end of the year, I started to experience arthritis in a number of joints, but knees and ankles proved to be the most problematic. There was some discussion of stopping treatment altogether–scans showed stable disease and, to the extent I had occasional PET scans, no uptake. Instead, I opted for treatment every 12 weeks (following consultation with MSK)–on the theory that nivo's half-life in the body is around 12 weeks. I had 2 of those infusions (March and May) and have now paused treatment. In addition to the arthritis, which has now persisted for ~10 months, I developed pneumatosis (bubbles in the interior wall of the colon). The pnematosis is asymptomatic, but has increased from scan-to-scan. I've been on antibiotics for the past month and the hope is that they will knock out the pneumatosis. Not clear that the pneumatosis is related to treatment–neither Penn nor MSK are aware of it being a side effect. If things weren't going "well" from a melanoma standpoint, I probably would be continuing nivo (and may return to it in any event). So, at risk of jinxing myself, I've been stable or better as a result of ipi/nivo for more than 18 months. Otherwise, life is great. Recently, our washing machine flooded (and ruined) the first floor of our house. I immediately thought how great it is to be dealing with mundane problems like home repairs versus the life-threatening challenge of Stage IV melanoma. Don't know if my stability will last, but I'll continue to take it–and be grateful for it–one day at a time. Best, Mat
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