Keith617

My update – a little after five weeks in and I claim to be thriving, because I feel better than I have in a couple years. MRI of brain and spine show stability, but no changes to existing tumors. Spinal fluid is stable on the shunt. It is the first therapy I've been able to tolerate at full dose.

This therapy continues to contribute to the debilitating synovitis that first showed as swelling and was considered "a normal side effect" from braf inhibitors of the past. Regardless of being on treatment for R/A, icing, hot pads, and wearing compression, it gets worse each day. I do see the near-constant dull headaches and some mornings wake up feeling hungover with no desire to do anything but stay in bed. I know the headaches aren't related to the brain thanks to the recent images. But for anyone who's had endless brain tumors like I have, any headache is scary. Overall though, I'm way more functional and experience way less side effects than anything else I've done. Just hope it's working.

That's great to hear, Vince! And encouraging! I just took first full dose tonight. Hit complete toxicity on Zelboraf n Cotellic.

I did Zelboraf and Cotellic with great sucess. Worked for me foe about a year before toxicity. Maybe see if these are available? They are a bit older of drugs, but worked better for me than Tafinlar and Mekinist. I just started Braftovi and Mektovi today.

Joy and Vince,

Thank you for posting! So glad to have found this thread and glad to hear you are seeing results! My doctor asked me to consider this combo. I failed out of Mekinist/Tafinlar with Pancreatitis week 1. Then Zelboraf/Cotellic since March last year. Can't do the full dose of Cotellic without Serous Retinopathy. It has kept the body free of cancer, decreased size of the latest brain tumor but the brain just won't stabilize! Just (a month ago, still recovering!) underwent an emergency shunt install as we can't get the brain mets or LMD to just stay stable after over a year. I've lost a lot of quality of life, can barely walk from Prednisone destroying my knees. And Z/C causes Synovitis that we can't control – it appears I'm not handling the Biologic that gives me some relief. I am weak due to inactivity and I am really considering trying this combo in hopes of a better quality of life. I'm deciding by 8/27. I am so thrilled to hear you guys have seen shrinking tumors and wish you the best! I will be following this thread for sure and update on my situation. I did Keytruda before BRAF and it was where I saw the most success. I just couldn't handle the treatment! We did mix in some radiation to activate the antigens on Keytruda, but this is a practice not all Oncologists believe in or try. They definitely know it at Dana-Farber. I did 5 days radiation to a large soft-tissue tumor and it vanished.