stage 4 husband doing well on Brafi/Meki

Just wanted to give an update on my husband Jason. He's been on targeted therapy now since July 2018 and is still having success. His scan last week showed only 1 tumor remaining in his leg! Amazing! So he's scheduled for radiation on the one stubborn tumor and then will hopefully be given NED status for a while.

A quick recap for those of you who are suffering and scared like I'be been: He was stage 4 in March 2018 and it was everywhere: brain, bone, heart, lungs, and skin. He failed immunotherapy but had immediate success with Dabrafenib/Trametinib. We saw golf ball sized tumors shrink in days! He had cyberknife on his brain MET which seemed to shrink it quickly (though it could've been the pills too).

These pills are truly amazing when they work, though they can bring along some severe side effects. I've posted here a couple times about his relentless 103 – 104 fevers, severe rigors, and debilitating knee and ankle swelling/pain. The docs have had him on 30mg prednisone and dose-reduced the Dabrafenib (from 150mg to 75mg) which has worked until he attempts to taper the prednisone. Last month, after a horrible bout of fevers we started playing around with intermittent dosing on our own because his quality of life was really suffering. He took a 12 day break to reset his body and taper the prednisone to 20mg, then resumed the pills. He stayed on the pills for 2 weeks before breaking for 1 week and reducing to 17mg prednisone. He then increased the Dabrafenib back to 150mg and resumed the combo for 1 week, then took a 1 week break to reduce the prednisone to 15mg. It's a slow process and not all doctors would encourage it, but ours understands that quality of life matters. So far with this dosing he's had no fevers and been able to get back to working part-time. He's still suffering from joint pain and eye pressure during his "on" weeks, but loves his breaks.  

I would never suggest this approach since it got him kicked off his clinical trial, but I wanted to share our story with the community. Every BODY is different and at the end of the day, we are our own best advocates. I got this idea from reading about a current clinical trial right now that has patients taking full dose Dab/Tram on a 1 week on, 3 weeks off schedule. It's only phase 2 so again, I'm not suggesting others try this, only sharing our story.

My thoughts and prayers to everyone out there affected by melanoma and other cancers. Stay strong and keep advocating for yourself and your loved ones! 

-Shannon