My primary side effect has been a paralyzing of my epiglottis. This caused to potential for aspiration. I was hospitalize for 5 days, could only consume soft foods in small portions. I dropped 20 pounds and left the hospital at 178 at 6'7". It was difficult to speak and the muscles surrounding my neck became stiff in a protective response to the atrophy. With therapy, my ability to swallow has improved. I still have to watch how I eat (small bites with lots of chewing). I'm back to 195. My neck remains an ongoing issue, but it has improved. All that said, my whole body scans show NED:) and I'm not restricted from daily activities. My bball game has suffered, but at 68 and running full court, I am just grateful to be out there with "my boys". No more meds. Dermatologist every three months and whole body scans twice a year. That's it. Of course, live life between scans!:)

My wife Lynn is taking the Braf. but can no longer take the Mek. due to the EF heart function which the Mek has taken her down to 20% too low so in lieu of the Mek. she has been on Keytruda which has reduced the lung tumors down to almost nonexistent, and the Braff has controlled the brain Mets to. The biggest problem we have with the Braf. meds are constant itching skin crawling. We have tried everything and when I say everything I mean everything the best thing we have found is a veterinarian lineament for horses spearmint, which is non-greasy does not smell, but overrides the itching for at least three hours and then it’s back. But even with that short term fix, I wish there was another solution because it’s getting old other than that itching. We could almost have a normal life lol.. Lynn was diagnosed with melanoma December 10, 2017

I take both of these meds and have for 3 years now. I have been very successful with them. I did/ do suffer several side effects. Nausea was the worst and lasted the longest. Eye’s blurry sometimes but optometrist said I have 20/20 vision. I have joint pain which is a real pain but, I have some mild pain med to take in case nothing else helps. I have chemo brain which sure messes with my ability to think or remember like I once did. Overall, I can’t complain. Over the past few months the nausea has stopped but the blurred vision, memory and energy are still an issue. I refuse to give in to those as long as possible. I do hope you are spending time outside and able to get some walks in. That is my part in fighting this beast. I have too much to do and see to slow down. I even bought a golf cart to ride around on with my dogs on leashes running beside me like I am Santa and they are my reindeer ! May look crazy but heck I don’t care. Having as much fun as possible every chance I get!! Thinking about you!!

Guy, it turns out my oncologist feels differently about the new meds I'm on and has discontinued them:)). These are more to protect against any new growth not to kill further bad guys as I understood previously. Guess I didn't have my "listening" ears on that day:).

David,

My 12 months of of Ipi/nivo treatment apparently eventually knocked out my three left lung tumors. And possibly kept anything recurring after my left brain tumor excision surgery.

I certainly wish you all the best.

Guy