I’ve been a silent reader of everyone’s experiences for a while now. Thanks to all of you for your collective insights – it helps to hear versions that are real-world and not just statistics.
Statistics. I think that’s the biggest lesson, yes? Everyone is different, and until you roll the dice, you don’t know where you’ll be.
Our story: My husband had a lesion removed from his back in Aug 2015. Stage IIc.
Lung mets (3 + some too small for measure) popped up in May 2016. He entered the intermittent arm of BRAF/MEK in July 2016…. a good thing since fever became a big issue … dose reduced almost immediately, and then again last month. Lung mets reduced (smallest ones went away).
We chose targeted therapy since he is a Type 1 diabetic. We weren’t sure that immunotherapy would be kind to him, given his diabetes, and targeted vs. immunotherapy was presented as a tossup… so we chose the easier path… it seemed promising given lung mets only and LDH in more the normal range.
15 months of BRAF/MEK – a good run. We hoped it would continue as life was reasonably easy despite fever and fatigue for 3ish weeks out of 8…
… but, here we go.
Brain mets showed up this week – 3 of them. In hindsight I look back at his primary tumor numbers – high mitotic rate, etc. I’m glad (or at least informed) that I snapped a phone pic of the tumor statistics on his chart (they weren’t offered to me – I rifled through his chart). He’s off the targeted therapy trial. New plan is gamma knife for the brain mets and ipi-nivo.
Wish us luck as we navigate side effects of immunotherapy vs. diabetes, and again, thank you all for sharing your personal journies. I’m not afraid of the gamma knife for my husband, thanks to you, and ipi-nivo? … well, it seems our oncologist is tracking well with the latest technology. That’s reassuring, at least. 🙂
-Bette
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