Anyone get 9 tiny brain mets while on braf/mek after failing ipi nivo and still hanging in there?

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12/9/2017 9:34pm
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Replies: 6

Because that’s what I just got. What is the best I can expect? Is two year survival even possible now? Has anyone received any good news after 9 tiny brain mets were discovered after failing ipi/nivo while on vem/cobi...and I’ve just had two doses of pembro thrown in for good measure. 

9 just feels like so many, right? 

There are patients on this board who have succesfully battled even bigger number brain tumors  and are still alive and NED. Please don't put a number on your survival....have you discussed SRS and iimmunotherapy/checkpoint inhibirtors/ with your onco team as the  next  treatment after Taf/Mec?It had worked  quite successfully for other patients.I hope you will hear from them soon.Best of luck to you

Yes, concurring with previous poster!! What do your docs say?? I hope you are dealing with a melanoma specialist who can work hand-in-hand with a radio oncologist. You've just had pembro - studies show lots of hope when radiation and immunotherapy are given in close proximity. Please, please do not think you can't get past this - you should (hopefully) be in a good position to receive SRS (preferably gamma knife).  If your doctors don't have such a plan in mind for you, then get a 2nd opinion or 3rd if necessary!! There are many on this board who have dealt with brain mets - they CAN be overcome!!! I'm wishing best possible outcomes for you!!


9 does feel like a lot when you see it in the doc's face. However, there have been patients with many more treated AT ONE TIME with gamma knife or another form of SRS. Take care of the brain first. Dig around your area and find a really really good radiation oncologist. Also, perhaps give that Pembro a few additional rounds while you and your docs search for a "new blend" of meds from what we are seeing in current trials. 

Do not despair! As others have noted above, multiple members of this forum have survived brain met counts in the double digits. I'm no expert, but I've been reading posts on this forum and elsewhere for several months since joining the club, and there are many stories of success in overcoming them. ~ Carol

I got a big, fast growing brain tumor after taking a short break from immunotherapy due to side effects.  Surgery removed it and at the 10 days post op MRI it was growing back.  It was completely irradicated with SRS and immunotherapy.  So far no new mets.  When I started immunotherapy I had two or three small brain mets which it took care of.  It's terribly scary to think about so try taking a breath instead of freaking out.  There is hope.  Think you can do this and then you will.  I believe you can do this.  Good wishes to you and yes, 9 feels like so many.  


Thank you for this. I needed it.